Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
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Patient and public engagement in healthcare system policy:
An integrative review
Caryl Harper, RN, BA, BSN (Distinction)
UVIC ID: V00243084
A project submitted in partial fulfillment of the requirement for the Degree of Masters of Nursing from
the University of Victoria, School of Nursing Faculty of
Human and Social Development.
Supervisor: Marjorie MacDonald, RN, PhD, Professor, School of Nursing, University of Victoria
Committee Member: Lenora Marcellus, RN, BSN, MN, PhD, Associate Professor,
School of Nursing University of Victoria
October 23, 2015
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Abstract
The need for greater patient and public engagement (PPE) in policy-making in the healthcare
system has garnered significant attention from governments (Lewin, Lavis & Fretheim, 2009). Patient and
public involvement (PPI) has been at the core of the United Kingdom’s (UK) British National Health
Service (NHS) and was accelerated by the Health and Social Care Act 2001 (Tritter & Koivusalo, 2013).
In the UK PPI is implemented to create a national mechanism for holding policy-makers in governments
and health-care provider organizations accountable for planning and delivering health services. One of the
ongoing challenges of engaging the public or patients is how best to involve patients and the public in
health policy and decision-making (Thurston, et al., 2005). In this paper, I explore the findings from my
review on PPE policy to understand if PPE policy makes a difference within the healthcare system. I have
included qualitative and secondary sources, grey literature, and mixed methodology literature published
between 2002 and 2015 (January to March). I conducted an integrative review and organised the findings
using the Services Management (SM) and Service-Dominant (SD) Theory (Osborne, Radnor & Nasi,
2012). The following three themes were identified in the findings benefits of PPE policy, challenges for
policymakers, and governments’ role in PPE policy. An analysis of the key themes revealed a number of
policy challenges and recommendations for policy makers, healthcare and nursing leaders specific to PPE.
The Advanced Practice Leadership (APL), Master of Nursing, University of Victoria program includes
policy competencies. I developed an Integrated PPE Framework for Public Service and Nurse Leaders
that includes APL competencies, theoretical concepts and the findings in this review. Future efforts in
PPE should include research on how PPE is linked to accountability, translated into policy and practice,
and evaluated using standardized, valid, reliable, and appropriate measurement systems.
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Acknowledgement
I would like to extend my sincere gratitude to Dr. Marjorie MacDonald (supervisor) and Dr.
Lenora Marcellus (committee member) for their support. Their guidance and expertise in scholarship
have inspired me to improve my critical thinking and writing during an extended effort to complete this
project. Most importantly, I thank God. I also thank my sister Bettyanne, friends, physicians, colleagues,
and patient partners in B.C. for without their love, support, inspiration, and continual encouragement this
project would never have come to fruition.
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Table of Contents
Abstract..................................................................................................................................2
Acknowledgements................................................................................................................3
Purpose/Aim of the project.....................................................................................................6
Background and Significance.................................................................................................7
Statement of problem..............................................................................................................9
Methodology.........................................................................................................................10
Problem identification ..............................................................................................10
Literature search .......................................................................................................10
Inclusion and Exclusion Criteria...................................................................11
Data evaluation..........................................................................................................13
Data Analysis........................................................................................................................15
Data reduction...........................................................................................................16
Data display...............................................................................................................17
Data comparison........................................................................................................17
Conclusion drawing and verification........................................................................19
Presentation...............................................................................................................20
Findings................................................................................................................................20
Discussion.............................................................................................................................29
Strengths and limitations.......................................................................................................42
Significance of the findings for:
Advanced Practice Nursing Leaders.........................................................................44
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Nursing Educators ....................................................................................................48
Public Service Professionals and Policymakers........................................................50
Recommendations from the findings for Future Research....................................................51
Conclusion............................................................................................................................52
References.............................................................................................................................54
Appendix A. Interchangeable terms and common elements for the concept of patient
and public engagement...................................................................................65
Appendix B. Patient and Public Engagement Frameworks..................................................67
Appendix C. Guiding framework for critiquing qualitative literature..................................68
Appendix D. Guiding framework for critiquing secondary/grey literature..........................69
Appendix E. Summary and Data Extraction of the Sources.................................................71
Appendix F. Mind Map: Interconnections – Patient and Public Engagement Policy.........99
Appendix G. Data display of the patient and public engagement influencing factors,
levels of engagement and policy....................................................................100
Appendix H. Data Comparison Influencing Factors of PPE Policy/Country.....................104
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Patient and Public Engagement in Healthcare System Policy
Purpose/Aim
The purpose of this project is to gain a better understanding of the existing knowledge about
patient and public engagement (PPE) within the context of healthcare system policy. In this project, I
critically review and analyse literature from 2002 to 2015 (January to March) on PPE that holds relevance
for policymakers, nurses, and healthcare leaders. My overall purpose is to position nurses, healthcare
leaders, researchers, policy makers, and patients and families to work together to co-create a sustainable
healthcare system. In addition, I chose to do this integrative review to further my understanding as a
novice Masters-level researcher in furthering my understanding of the policies, concepts, and the existing
evidence on PPE policies. This integrative review has allowed me to explore various PPE policies in the
context of healthcare.
I selected the integrative review as the most suitable method for this project for three main
reasons. First, I wanted to develop a PPE policy framework and by definition, integrative review is “a
form of research that reviews, critiques, and synthesizes representative literature on a topic in an
integrated way such that new frameworks and perspectives on the topic are generated” (Torraco, 2005, p.
356). Second, I was interested in gleaning a more comprehensive understanding about the challenges and
successes of PPE in the context of health policy and policymakers, and the integrative review method
“summarizes past empirical or theoretical literature to provide a more comprehensive understanding of a
particular phenomenon” (Whittemore and Knafl, 2005, p. 546). Third, as a novice Masters-level
researcher, I believe that this review process supports my learning needs. The specific question I am
asking is “Do PPE policies make a difference in the healthcare system?”
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The goals of this integrative literature review will focus at the policy level to
1. Explore, describe, and synthesise the existing knowledge about what healthcare leaders and
policymakers need to know and do to ensure successful PPE in healthcare system policy;
2. Develop a conceptual framework that can inform the future design of PPE in healthcare system
policy; and,
3. Identify areas to inform advanced nursing policy, practice, and research.
Background/Significance
Patient engagement in healthcare policy, practice, and research is commonly believed to be a key
ingredient in high-quality health care systems (Barello, Graffigna & Vegni, 2012). Moreover, patient
engagement in policy (frequently described as “citizen or “public” engagement) helps ensure that the
healthcare system writ large is oriented around and responsive to patients’ and the public’s perspectives
(Carmen et al., 2013). National Health Service Scotland health boards and Foundation Trust boards in
England support the tenet that patients must be involved at all levels in health governance including an
emphasis to involve patients and carers in the design, delivery, and evaluation of services (Forbat,
Hubbard & Keamey, 2009). Additionally, the patients’ involvement in designing, delivering, and
evaluating services provides the context for substantive policy and organizational development (Forbat,
Hubbard & Keamey, 2009).
From a Canadian perspective, I am encouraged about the leadership and collaboration shown
between the Canadian Nurses Association and the Canadian Medical Association 2012 Primary Health
Care Summit. Specifically, the Summit Report identifies priority areas for action included building
professional and inter-sectoral partnerships for advancing primary health care transformation and ensuring
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that the public is included in the partnerships at the local, regional, provincial, and national levels for
system re-design (Lankshear, 2012).
To set context for this review, there are two specific areas that warrant further explanation. First, I
need to explain the meaning of the term patient and public engagement because it is often confused due to
different authors using different terms to refer to the same thing. I also wanted to make sure my search
strategy for this integrative review incorporated multiple terms for PPE to ensure that a thorough and
successful search approach was used in my integrative review. Second, I will elucidate the different
levels of PPE. The levels of engagement are important because I wanted to focus this integrative review
on papers reporting higher levels of engagement from a policy systems’ perspective rather than at an
individual level where engagement is typically between a patient and a healthcare provider.
First, although the concept of patient engagement is increasingly accepted and valued among
health care stakeholders (Gallivan, 2012), there is often confusion about its meaning because, as noted
above, different authors may use different terms to refer to the same thing. For example, in a scoping
review, Kovacs Burns, Bellows, Eigenseher, and Gallivan (2014) found 15 synonyms for patient
engagement in 26 different sources. These terms are often used interchangeably. By contrast, I found
twenty 20 interchangeable terms and common influencing factors for the concept of PPE (see Appendix
A). The most common interchangeable terms were used in the search strategy for sources included in the
integrative review.
Second, there are factors that influence PPE, such as (1) ongoing engagement mechanisms that
support patients and the public to participate in societal decisions, priority setting, and healthcare system
policy development; and, (2) different levels, forms, and settings of engagement throughout the healthcare
system (see Appendix B). The levels, forms and settings of engagement can be described along a
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continuum (Carmen, et. al., 2013). For example, on the lower end of the continuum, engagement could
involve policymakers and/or healthcare providers/leaders informing or educating patients or members of
the public individually on a direct care basis (e.g., self-management, healthcare information). The higher
end on the engagement continuum could involve policymakers and/or healthcare leaders engaging
patients and/or the public in co-creating or sharing power in decision making at healthcare system policy
levels. Lower and higher levels of engagement on the continuum are characterized by lower and higher
levels of patient or public decision making or responsibility. Although there is “the possibility that a
greater impact could be achieved by implementing interventions across multiple levels of engagement”
(Carmen, et al., p. 227), I limited this integrative review to include only those sources related to higher
levels of engagement at the policy healthcare system. I limited the scope to higher levels of engagement
was to keep the focus of this integrative review on organizational and system levels of engagement.
Individual-level engagement (e.g., interaction between healthcare provider and patient) is often associated
with lower engagement levels.
Statement of Problem
John Doyle, former Auditor General of British Columbia, argued that in order to get public
participation right, there needs to be the correct balance amongst the competing priorities of government
(British Columbia, Office of the Auditor General, 2008). Doyle cautioned that getting public participation
wrong frustrates all participants — government and the public —and when participation is not successful,
it takes time to rebuild trust for successful engagement (British Columbia, Office of the Auditor General,
2008). Moreover, citizen participation, including public participation in policy-making processes, is now
formally mandated by policy in many economically-developed countries (Martin, 2009). Martin also
emphasized that the public is now more demanding and knowledgeable about policy, so it is important to
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understand their needs and desires. Nurses are well positioned within and outside of government to
leverage their collective voice to ensure successful PPE policy at multiple levels. Thus, an examination of
the factors that influence PPE in healthcare policy is needed to better understand how PPE can be
supported and promoted within this context of healthcare system policy. This understanding may help
leaders in public service including nurse leaders, researchers, patients, and the public to develop more
effective policies to achieve improved governance accountability and increased diversity of perspectives
on policy issues.
Methodology
In this project, I followed the five specific stages of the integrative review methodology outlined
by Whittemore and Knafl (2005). These include (1) Problem Identification, (2) Literature Search, (3)
Data Evaluation, (4) Data Analysis, and (5) Presentation.
Stage 1: Problem Identification Stage
Although I have identified the problem of this project in the previous section, I also want to
emphasize that, despite the acknowledgement of the importance of public involvement in healthcare
policy, there has been very modest inquiry in policy and academic discourse into the purpose of PPE and
how the success or limitations of policy might be assessed (Mullen, et al., 2011). My intention in this
project was to be rigorous enough to provide insight into the current knowledge about PPE at the
healthcare system policy levels. This information may inform government policy makers, nursing, and
other healthcare leaders and researchers about PPE at various policy levels. My intention was also to
draw the attention of policymakers, nurses, and other healthcare leaders to the importance of PPE,
specifically the benefits, successes, challenges, and gaps in knowledge about PPE in healthcare system
policy.
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Stage 2: Literature Search Stage
Whittemore and Knafl (2005) advise that developing a strategy for literature searching is crucial to
avoid bias or inaccuracies in the selection of studies. In order to capture a maximum of eligible sources
for this integrative review I used the following databases: Cumulative Index to Nursing and Allied Health
Literature (CINAHL) database (Advance Search); Google Scholar; Medline Ovid; AbiInform Business
Source Premier (EBSCO); College of Registered Nurses of British Columbia (CRNBC) EBSCO; and
Web of Science. Whittemore and Knafl also advise using two to three search strategies. I used three
search strategies. First, I retrieved sources from the above databases using the following search terms:
engagement, patient and public engagement, patient and family engagement, client engagement, public
participation, citizen engagement, patient and public involvement, patient involvement, citizen
involvement, citizen participation, health policy, healthcare system, health research, and health reform.
These terms were the most common terms found in Kovacs Burns, et al.’s (2014) scoping review and the
interchangeable terms that I located (see Appendix A), which are described in a previous section of this
paper. Any of these terms were present either in the title or the abstract. Second, I also applied an
ancestry search approach to broaden the search of the topic. The ancestry search approach that I used was
inclusive of authors’ recommendations within the literature, and/or was obtained through the
bibliographies of articles meeting inclusion criteria for this review. Ancestry searching refers to
reviewing citations from earlier studies cited in references of published articles (Conn, et al., 2003).
Third, secondary sources such as grey literature, reports, white papers and documents from health
authorities, government, universities, and colleges were also searched using ProQuest, open grey, Grey
Matters, and government sites.
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Inclusion and Exclusion Criteria. After conducting the literature search and reviewing the
sources, only the sources that met the inclusion criteria were selected for this integrative literature review
project. The following inclusion criteria were applied: sources published between 2002 and 2015
(January-March), English only, and only those sources in which patient and public engagement occurred
within a healthcare policy context at either the regional, provincial, or national level. To keep the volume
of literature manageable, excluded sources were those published before 2002, and those that focussed on
healthcare provider engagement, patient and/or provider engagement supporting self-management, and
patient and public engagement focussed on unique specific diseases, conditions, or cultures. I also
excluded patient and public engagement policy sources focused on mental health and substance use, HIV
Aids, and methadone maintenance treatment. They were beyond the scope of my project and could be
considered for further research. A total of 3777 sources were found using the above listed databases. Six
articles were located via an ancestry search that met the inclusion criteria. Fourteen sources from the grey
literature met the inclusion criteria.
The abstracts, executive summaries, and/or introductions of the 3777 were reviewed to determine
whether they met the inclusion criteria of the review. Through this process, 317 sources were selected
based on the abstracts, executive summaries, and/or introductions. A second screening was conducted and
the full texts of the 317 sources were reviewed resulting in the selection of 39 sources that met the
inclusion criteria as illustrated in Figure 1.
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Figure 1. Identification of eligible studies
Stage 3: Data Evaluation Stage
Descriptive information on the selected sources. The 39 sources addressed existing knowledge
about patient and public engagement at the policy level. After critiquing all sources (explained in the next
section) 2 were screened out leaving 37 sources remaining for the integrative review. Although there
were 3 mixed method studies, there were no quantitative studies screened in for this review and this may
have some implications for future research. The 37 sources are listed in Figure 2.
3777 Sources
1st screening: abstracts, executive summaries/introductions and articles based on the inclusion criteria
3460 sources excluded 317 sources included
2nd
screening: full texts reviewed based on inclusion
280 sources excluded
39 sources included
Databases search using keywords
2 screened out leaving a total of
37 sources included
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Figure 2 Descriptive information of the thirty-seven selected sources
Grey Literature N=15
Government Reports or Documents: (n=6) British Columbia Office of the Auditor General, 2008; House of
Commons, The Public Administration Select Committee, 2013; House of Commons, The Health Committee,
2007; Patient and Public Experience & Engagement Team, 2011; Government of Newfoundland and
Labrador, n.d.; Directorate Office of the Chief Medical Officer, 2007
Government Policy and/or Procedures: (n=3) Lenihan, 2012; Capital Health, 2014; State of Victoria,
Department of Human Services 2006
Government Frameworks: (n=2) Canadian Institute for Healthcare Research, 2014; Queensland Government,
2012
Government Briefing Document: (n=1) Institute for Public Administration, MNP & Fasken Matineau, 2013
Government Handbook: (n=1) Sheedy, 2008
Evaluation Guide: (n=1) Warburton, Wilson & Rainbow, 2011
Government Action Plan: (n=1) Scottish Government, 2007
Qualitative Research N=17
Case Studies: (=6) Mullen, Hughes, Vincent-Jones, 2011; MacKinnon, 2003; Kovacs-Burns, Bellows,
Eigenseher & Gallivan, 2014; Ansari & Andersson, 2011; and Bovaird, 2007; McCaffery, K, J., Smith, S.,
Shepherd, H, L., Sze, M., Dhillon, H., Jansen, J., Juraskova, I., Butow, P, N., Trevena, L., Carey, K.,
Tattersall, M, H, N., & Barratt, A. 2011.
Literature Reviews: (n=2) Carmen, et al., 2013; Tritter & McCallum, 2006.
Systematic Reviews: (n=2) Oxman, Lewin, Lavis, & Fretheim, 2009; Martin, 2009.
Systematic Scoping Review: (n=1) Conklin, Morris & Nolte, 2012.
Historical: (n=4) Hogg, 2007; Church, Saunders, Wanke, Pong, Spooner & Dorgan, 2002; Martin, 2008;
Tritter & Koivusalo, 2013.
Ethnographic: (n=1) Meads, Griffiths, Goode & Iwami, 2007.
Comparative Study: (n=1) Legare, Stacy, & Forest, 2007.
Secondary Sources N=2 Literature Reviews: (n=2) Cavaye, 2004; Edgaman-Levitan, Brady, & Howitt, 2013
Mixed Methodology - Qualitative and Quantitative N=3
Comparative Quasi-experimental Design: (n=1) Abelson, Forest, Eyles, Casebeer, Martin & Mackean, 2007;
Randomized Trial Process Evaluation: (n=1) Boivin, Lehoux, Burgers & Grol, 2014.
Grounded Theory with quantitative analysis: (n=1) Thurston, MacKean, Vollman, Casebeer, Weber, Maloff,
& Bader, 2005.
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Quality and Relevance Assessment. I used and adapted two evaluation frameworks to evaluate
and score all of the 39 sources: first, Coughlan, Cronin, and Ryan’s (2007) framework for critiquing
qualitative research; and second, McCaston’s (2005) evaluation guide for critiquing secondary sources
including grey literature (in respective order see Appendix C and Appendix D).
I followed the steps in critiquing the qualitative sources outlined by Coughlan et al. (2007) for
qualitative research to evaluate each element assigning each question one point for a maximum total of 39
points and a minimum total of 26 points (see Appendix C). Similarly, I followed the steps in critiquing
the grey literature and secondary sources outlined by McCaston (2005) for secondary sources to evaluate
each methodological element assigning each question one point for a maximum total of 35 points and a
minimum total of 25 points (see Appendix D).
Scoring is recommended to help evaluate the rigor of the sources, rather than for the purpose of
exclusion from the review; moreover, as Whittemore and Knafl (2005) highlight, the score, whether high
or low, can be used to measure the magnitude of the source’s importance to the review in the analysis
stage. Based on quality scores there were only two sources that were excluded. Of the 37 sources that
were included, 20 were qualitative sources or mixed methodology that scored a minimum of 26 points
(moderate quality) and a maximum of 39 (high quality); 17 were secondary or grey literature sources that
scored a minimum of 25 (moderate quality) and a maximum of 35 (high quality). Therefore, 37 sources
were considered of sufficiently high quality to be included in this integrative review project.
Stage 4: Data Analysis
The main goal of the data analysis stage is to synthesize the evidence into an innovative
interpretation (Whittemore & Knafl, 2005). The data analysis stage is divided into four phases: Data
reduction, display, comparison, and conclusion drawing and verification (Miles & Huberman, 1994).
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Prior to outlining the four phases of the data analysis in the next section, I will explain two overarching
analytical approaches that I used throughout the integrative review project that helped inform and
influence my thinking from the research and sources in this review.
First, I used the Constant Comparison Method (CCM). The CCM and theoretical sampling form
the core of qualitative analysis in the grounded theory approach and in other types of qualitative research
(Boeije, 2002). Comparison is the main principle of the CCM analysis process and includes a multitude
of different aids (e.g., close reading and rereading, coding, diagrams, data matrices) to enable the principle
of comparison. I used a number of these aids to convert extracted data such as close reading and
rereading, coding, and construction of data matrices to support the principle of comparison. Second, I
used the contrasting notions of convergence and divergence as an analytical method to draw out the key
themes (Hewison, 2008). According to Hewison, the application of this analytical method is essential in
framing policy discussions and therefore pertinent to this project. Examples of how I applied this method
included reviewing the synthesis, implications and recommendations of each source to identify themes
and sub-themes (convergence); and, reviewing each individual source several times to identify broad
patterns (divergence) in applicability, similarities, and differences specific to PPE policy.
I compared similar data (point by point) and grouped categories in preparation for coding. Next,
the coded categories were compared in order to advance the analysis and synthesis processes.
Subsequently, data were extracted and coded from primary, secondary, and grey literature sources to
simplify, abstract, focus and organize data into an appropriate matrix to assist with my ability to compare
and theme data.
Phase 1: Data Reduction. Whittemore and Knafl (2005) posit that data reduction is a necessary
process in an integrative review because it will simplify, focus, and organize data into a manageable
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system. For this phase I summarized each of the sources included in the integrative review into a one
page document. The headings of each one page document included (a) number of the article, (b) author
and country, (c) subject of the article/source, (d) method and setting (regional, provincial, national), (e)
findings, (f) engagement levels (individual, community, and system), (g) limitations, and (h) implications
and recommendations. This approach assisted me with organizing and systematically comparing the
sources of literature on the components of healthcare policy focussed on patient and public engagement at
various jurisdictional and policy levels.
Phase 2: Data Display. The next step, data display, involved converting the extracted data from
individual sources into a display (see Appendix E) that further synthesized the data from multiple
primary, secondary and grey literature sources around levels of engagement, and levels of setting (e.g.,
regional, provincial, national). Data were displayed according to the same headings used in the one page
data summary explained in the data reduction section above. These displays enhanced the visualization of
patterns and relationships within and across primary, secondary, and grey data sources and served as a
starting point for interpretation of the relationships, applicability, similarities, and differences.
I developed a Mind Map (see Appendix F) of the Interconnections – Patient and Public
Engagement (PPE) Policy that was helpful in focussing on the multiple interconnecting elements that
influence patient and public engagement policy. The map is intended to graphically show barriers,
challenges, factors, and concepts that influence patient and public engagement policy. It also provides a
visible map to readers of this review.
Phase 3: Data comparison. To examine data displays (see Appendix G) of primary and
secondary sources and identify patterns, themes, or relationships, I grouped the factors influencing PPE
according to broad headings and sub-headings. I developed the broad headings and sub-headings for the
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influencing factors of PPE policy and by reading and re-reading primary, secondary, and grey data
sources and constantly comparing the patterns and relationships within and across the sources. In addition
to the number of the source and the citation, there were four broad headings and twenty four sub-
headings. These included (1) multiple stakeholders - influencing factors for PPE (patient/public;
provider(s)/organizations; academics/researchers/university; policymakers / administrators; and,
mechanism for ongoing PPE); (2) the reasons healthcare policymakers engage in PPE (improve
collaboration and/or knowledge sharing; accountability; reduce health delivery fragmentation or improve
effective health system; ensure equity; patient centered care; more diverse ideas, perspective, suggestions;
policies more accessible and responsive to citizens; better informed decisions; limited resources’
available; inform healthcare system policy; social capital; improved governance, accountability; citizens’
rights; and democratic legitimacy); (3) levels of engagement (community/organization; and system
partner, leadership co-design, shared decision making); and, (4) policy levels (policy at the regional,
provincial, county or national/federal level). I developed a coding scale (see Figure 3) to evaluate and
analyze the influencing factors for PPE policy from the research, secondary, and grey literature sources
and identify patterns, themes, or relationships. After I coded each source based on four broad categories
(and sub-categories) I compared influencing factors per geographic representation (See Appendix G) and
explored further characteristics such as patterns, themes, relationships, or conclusions.
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Figure 3 Five Point Coding Scale PPE/Policy Influencing Factors
Category Points
Awarded
Elements
PPE Influencing
Factors
4 (1 point
each)
Multi-pronged engagement with patients; provider(s)
organizations; educators/ researchers; policymakers/ health
administrators
5 points
awarded for
mechanism
Mechanism for ongoing patient and public engagement
Reasons healthcare
policy makers are
engaging patients
and the public
Maximum
14 points
(one point
each)
Improve collaboration, knowledge sharing and accountability,
reduce health delivery fragmentation, ensure, equity, patient
centered care services, effective healthcare system. More
diverse ideas, perspectives, suggestions, policies more
accessible and responsive to citizens, better –informed
decisions, with limited resources available. Inform healthcare
systems policy: social capital, improved governance
accountability, citizens’ rights, and democratic legitimacy
Levels of
Engagement
3 points Level of Engagement at the Community/Organization
(e.g., organizational design, governance
5 points Level of Engagement at the System Partner (e.g., leadership,
co-design, shared decision making)
Policy Levels
(Legislation- Legs;
Regulations – Regs)
3 points Policy at the Regional level
5 points Legs/Regs Policy at the Provincial level
5 points Legs/Regs Policy at the National/Federal level
Phase 4: Conclusion Drawing and Verification. Whittemore and Knafl (2005) state that this
final phase of data analysis includes a shift from efforts to interpret the description of patterns and
relationships to an elevated level of abstraction, thus allowing findings to be generalized. This final phase
comprised reviewing data, isolating patterns and processes, and identifying the common themes and
differences among the elements, which highlight the challenges and successes PPE policy (Whittemore &
Kanlf, 2005). Moreover, this process is a gradual elaboration of a small set of generalizations that
encompasses a subgroup of the entire integrated review. Miles and Huberman (1994) suggest conclusions
or models are developed via a continual revision process to help ensure the inclusion of as much of the
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data as possible. Additionally, in order to ensure accuracy, this stage included validating the conclusions
with all of the 37 sources in my integrative review and reading and re-reading sources.
In the final part of the data-comparison stage of my integrated review I synthesize the significant
elements of the conclusions of each subgroup into an integrated summation of the elements that influence
patient and public engagement policy (Whittemore & Knafl, 2005)
Stage 5: Presentation. The final phase of the integrative review process included the presentation
of the review findings and discussion section. The final phase has five sections. First, I summarize the
findings of my analysis from sources selected for this literature review. Second, I identify an appropriate
theory that will help interpret the findings. Third, I discuss the integrative review findings that help to
provide a better understanding of the existing knowledge about patient and public engagement within the
context of healthcare system policy. Fourth, I present an integrated framework for policymakers, public
services, and nurse leaders specific to critical aspects of patient and public engagement healthcare system
policy. Lastly, I present the strengths and limitations of the study and recommendations for future
research and nursing leaders.
Findings
The findings of the integrative review for this project show that there are benefits for government
and public citizens in PPE policy. There are also challenges and specific roles for government to play in
promoting or facilitating PPE policy. Three themes emerged from the findings reviewed in this project.
The three themes are presented below to help illuminate the findings: (1) benefits of PPE policy (2)
challenges for policymakers (3) governments’ role in PPE policy. I will describe the first theme, the
benefits of PPE policy, and then talk about the other themes in the order listed above.
Benefits of PPE Policy. The first theme from the findings, benefits of PPE policy, shows that both
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government policy makers and public citizens benefit from PPE in policy making. I will explain the
benefits with examples to show why they are perceived as benefits.
From a public service perspective, improved governance is seen to be a key benefit of PPE in the
policy process. Before I discuss improved governance I will provide a very brief explanation to set the
context about why governance within public service needs to improve.
Traditionally, healthcare system policy within the public sector has been a top down driven
process reserved for policy-makers and high level decision makers. More recently, a strategic direction in
the policy process incorporates a more prominent role for users and other members of the public in
healthcare policy, decision making, and outcomes and uses a top-down – bottom-up driven process
(Bovaird, 2007; British Columbia Office of the Auditor General, 2008; Capital Health, 2014; Legare et
al., 2007; Lenihan, 2012; Oxman, et al., 2009; Sheedy, 2008; Tritter & McCallum, 2006). The main
premise of the top down and bottom up combined approach versus a top down approach to policy making
in the context of PPE is that citizens and the public are viewed as full interactive partners in governance
instead of being seen in the traditional view of passive recipients of healthcare policies and services
(Lenihan, 2012; Legare, Stacy, & Forest, 2007).
One of the main benefits of effective PPE policy is improved democratic legitimacy, which can
improve governance (Warburton, et al., 2012). Democratic legitimacy can help to validate accountability
and citizen rights, which is a reason for government(s) to embed PPE in the policy process. Some
examples may help to provide further understanding. The NHS Scotland’s Better Health Better Care
Action Plan describes their aim to have a more inclusive relationship with the Scottish people in which
members of the public are affirmed as partners rather than recipients of care. The ownership and
accountability of the health system is shared with the Scottish people and the NHS staff, and the people of
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Scotland are co-owners with both rights and responsibilities. Further, in both Scotland and Ireland’s
NHS, collaborative and integrated approaches have the benefit of strengthening public ownership in the
culture of their healthcare systems (Scottish Government, 2007; Directorate Office of the Chief Medical
Officer, Northern Ireland, 2007).
Benefits of engaging citizens in policy or program development can, from the public’s point of
view, increase citizens’ sense of responsibility and understanding for complex issues (Sheedy, 2008).
From the public service point of view, engaging citizens in policy or program development can be an
important mechanism to clarify citizen’s values, needs and preferences, allowing public servants to
understand how the public views a public concern and what is most important to them, what information
the public needs to understand, and how to best present or speak about an issue (Sheedy, 2008).
Similarly, public engagement in policy making enables decision makers in the health system to address
the right issues, help design programs, and improve policy implementation (Kovacs-Burns, et al. 2014;
Oxman, et al., 2009).
An important benefit from the Patient and Public Involvement (PPI) policy perspective is that
peoples’ experience of services and the quality and safety of care is changed. Further, PPI can also
increase service responsiveness and accountability to local communities and the wider population by
involving them in the deliberations and decisions about service provision. Thus, staff morale and
satisfaction can also improve when staff realize they are providing a responsive service that is valued by
individuals and appreciated by the wider public (Directorate Office of the Chief Medical Officer,
Northern Ireland, 2007). Furthermore, the House of Commons Public Administration Select Committee
(2013) reported that engaging the public and experts in debates about policy and in the policy-making
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process and establishing new relationships where citizens become valued partners lead to new thinking
and proposed new solutions to challenges.
In summary, from the perspective of policy makers, government leaders, patients and the public
there is a range of PPE policy benefits. The range of benefits from the policy makers and government
leaders’ view includes improving democratic legitimacy, governance, policy implementation and staff
morale. The range of benefits from the patients and the public view includes improving peoples’
experience with the healthcare system and knowledge of complex issues, increasing citizens’ sense of
responsibility, and incorporating citizen’s values, needs and preferences in the policy process.
Challenges for Government(s) and Policymakers. The findings in this integrative review show
there are many challenges for government(s) and policymakers related to successful PPE policy. The
findings were organized around three main challenges. One of the challenges is that “doing” PPE wrong
can have multiple negative repercussions. The second challenge that emerged from the findings related to
internal barriers within the government environment. The third challenge emerged from PPE policy and
legislation that appeared to have decreased the engagement processes and may have negative outcomes
from the public point of view. The three challenges will be discussed in this section.
When government(s) and policymakers “do” PPE incorrectly, the negative repercussions from the
public can be significant. I will discuss three main points to set the context of this challenge. First,
government PPE policy is typically vulnerable to accusations about trying to manipulate the public using
cynical efforts to garner support rather than enhancing a participatory democratic process (Hogg, 2007).
Second, autonomous mechanisms for PPE (e.g., Community Health Councils in the NHS, UK) were set
up by the government but were later criticized for the Councils’ inconsistent and variable performance
due to the lack of accountability. Third, when the government “gets” PPE wrong there is a further loss of
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public good will and the perception of wasted public resources (British Columbia, Office of the Auditor
General, 2008; Hogg, 2007). Moreover, where there is engagement that is not done correctly by
government (e.g., a decision has already been made so there is no need for public engagement) public
cynicism towards government generally ensues. Engagement done wrong frustrates everyone and takes a
significant amount of time and effort to rebuild public trust (British Columbia, Office of the Auditor
General, 2008). Similarly, the Government of Newfoundland and Labrador (n.d.) caution that the costs
associated with not conducting public engagement appropriately may arise from actions needed to
respond or mitigate public lobbying, lack of buy-in from stakeholders, or loss of credibility with the
public.
The potential negative outcomes of “doing” PPE incorrectly in the government policy process that
are described above should be of concern to current government policymakers and decision makers.
Future research in this area may warrant attention, particularly the cost of “doing” PPE incorrectly in the
government policymaking process or not doing PPE at all. There may also be more research needed to
confirm that PPE improves governance, or has other benefits.
Next, I will discuss the internal government challenges that I identified in my review findings.
These challenges were located in the intra-organizational (within government) context. Policymakers are
required to manage the policy process and achieve political objectives within intense, pressured, and
uncertain timelines generally due to overriding urgent priorities within government (Church, et al., 2002).
In my previous experience as a government policy analyst and also within the scope of my nursing
practice as the provincial director of Patients as Partners strategy in the B.C. Ministry of Health, I found
that urgent competing strategic priorities within government are routine in this environment and attending
to required legislative actions would over-ride other services. Adding to this complex system is the policy
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process itself that is neither rational nor linear; to be more precise it is influenced by a multitude of
internal and external factors (Ableson, et al., 2007). Many governments, such as Australia, UK, and
provinces and territories in Canada, have moved toward engaging public and community in policy
processes. The question or challenge is - how can government(s) create a more flexible system to allow
for effective PPE within a “pressure cooker” environment (Cavaye, 2004)? The following examples from
the findings may provide some answers and will be discussed in the next section.
I will discuss the context of the third challenge then I will explain the specific criticism. The third
challenge from the findings about policy and legislation emerged from the United Kingdom (UK) NHS
experience. This may have been because Patient and Public Involvement (PPI) and/or patient led health
services in the UK have existed since 1974 (Hogg, 2006). Thus, the focus on UK NHS legislation in the
research may have emerged because of their extensive experience specific to PPI policy and legislation
over a longer period of time than other jurisdictions. UK legislation and policy was changed from
including extensive PPI to a narrower scope with less inclusive PPI and this change was one of the main
challenges that emerged in this review (House of Commons, Health Committee, 2007; Public and Patient
Experience and Engagement Team, 2011; Tritter & Koivusalo, 2013). Nevertheless, other countries (such
as Canada) with less patient and public engagement type legislative and policy experience may not have
experienced challenges yet. However, Canada and other countries could be well positioned to learn from
the extensive NHS experience.
The main criticism found with the UK policy/legislative change was a shift in direction that
involved narrowing the scope of public involvement to two specific areas. First, individual involvement
regarding choice about care; and second, access to a mechanism for advocacy regarding complaints (e.g.,
healthcare services experience was unsatisfactory). Whereas previous legislation included extensive
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public involvement and consultation in the health system policy process at multiple levels, new legislation
appears to have reduced engagement opportunities. The shift in policy direction is a challenge for
policymakers because of negative public accusations about government rhetoric regarding their pledge
“that patients must be at the heart of everything we do, not just as beneficiaries of care, but as participants,
in shared decision making” (Tritter & Koivusalo, 2012, p. 118).
Findings from this review are that there are challenges for government(s) and policymakers not
only to enact PPE legislation and policy but also to implement PPE correctly throughout the process.
Notwithstanding, the potential negative outcomes from these challenges and barriers may also be seen as
motivation for governments and policymakers to “do” PPE correctly. Further, despite the aforementioned
challenges there are also positive examples of PPE government policies and legislation that were
discussed in the first section of these findings.
Government(s) Role in PPE Policy. The government(s) role in PPE policy is the third theme that
emerged in the findings. There were two main points in this theme: first, provide leadership and second,
ensure there are formal PPE mechanisms, accountabilities, and responsibilities. I will discuss these points
beginning with leadership.
To set context specific to government leadership in PPE it may be helpful to state, at the outset,
that one of the leadership roles of government in healthcare is to set direction through legislation,
regulation, and policies for service delivery partners such as health authorities. For the purpose of this
section I will use the overarching term policies to refer to legislation, regulations, and policies.
Findings in this review show a range of diversity in PPE policies from detailed multiple
requirements to very minimal requirements. Examples of multiple requirements include Canadian PPE
policies enacted in Nova Scotia, Ontario, Manitoba, and the Yukon. These policies require regional health
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organizations to plan and implement thorough engagement and consultation processes with the public in
establishing health priorities and/or plans (Institute of Public Administration of Canada, et al., 2013). In
contrast, a minimal policy (related to patient and community engagement) enacted in British Columbia
(B.C.) only requires regional health organization boards to conduct board meetings that are open to the
public – unless there are mitigating interests that outweigh public disclosure (Institute of Public
Administration of Canada, et al., 2013). Another example of government leadership that provides
extensive direction, accountabilities, and expectations in PPE policy is from Australia. The Victoria State
Government Doing it with us not for us participation policy describes in detail the actions, rationale,
objectives, priorities, outcomes, and the expectation of collaboration (people working together) to achieve
better health and better healthcare through public participation (Department of Human Services, Victoria
Government, 2006).
These policy examples are from provincial or state regions, and it is important to realize that the
NHS UK example mentioned in the previous section is from a national perspective. Thus, it is difficult to
make comparisons between provincial/state versus federal, particularly when in Canada, the provinces
have jurisdiction over healthcare policies including PPE.
The second point that emerged in the government leadership role theme is about ensuring there are
formal PPE mechanisms, clear accountabilities, and responsibilities. It may be helpful to first explain
what is meant by PPE mechanisms. PPE mechanisms in this context mean structures such as
organizations, networks, forums, and health regions that usually have accountabilities and responsibilities
to provide healthcare services. In Canada, the provinces of Alberta, Quebec, and, Ontario are required by
provincial governments to establish PPE mechanisms. For example, in Alberta, the engagement
mechanisms are called health advisory councils; in Quebec, consultation forums; and in Ontario, Local
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Integrated Health Networks (LHINs). The people and organizations involved are held accountable and
responsible for engaging representatives and organizations that reflect the population and are also held
responsible for involving the public in local health system planning on an ongoing basis.
It is important for government leaders to recognize the need for involving diverse stakeholders in
the policy process. Currently, the need to involve diverse stakeholders (e.g., patients, public and
communities) in solutions to complex problems is being recognized by governments (Martin, 2008).
Some governments have radically reinterpreted the policy making process from an excluded process
reserved for policy makers and top decision makers to a process whereby negotiated outcomes involve
many interacting policy systems and co-production among citizens and multiple stakeholders (Bovaird,
2007).
Leadership from an internal government perspective emerged as important in the findings and will
be discussed next. Decision makers and leaders in government organizations have a critical and central
role within which they operate in shaping public participation (PP) implementation processes (Abelson, et
al., 2007). Boviard (2007) proposed that a new type or role of public service professional is needed (e.g.,
coproduction development officer) who can act internally within government and externally with partners
to co-produce strategic direction of the system. Specifically, expertise in partnering (e.g., or co-
producing) is needed within and external to government between traditional service professionals, service
managers, and the political decision makers who shape the strategic direction of the service system.
Government leaders have substantially increased Public and Patient Involvement (PPI) in policy
decisions and have invested significant public resources in setting up long-term mechanisms (local
partnerships) to one off events such as citizens’ juries (Ansari & Andersson, 2011). In Capital Health
(2014) in Nova Scotia, government leadership is required to report back to the public and participants in a
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timely manner to ensure accountability and compliance is aligned with their policies. Government
leadership in Scotland and Ireland’s NHS, use a collaborative and integrated approach that includes
strengthening public ownership in the culture of their healthcare systems (NHS Scottish Government,
2007; Directorate Office of the Chief Medical Officer, Northern Ireland, 2007).
In summary, the findings in this integrative review of the published and grey literature provided a
glimpse of the complexity of PPE in health care policy processes. The findings depicted a range of
benefits of PPE policy and various challenges and roles for policymakers to consider. The discussion
section introduces a theory that I chose to help interpret my findings.
Discussion
The discussion section is presented in three main parts. In the following two parts (1) identify and
provide a rationale for choosing an appropriate theory to interpret my findings and introduce the theory
and its four concepts; and (2) discuss my findings and how they are situated within the context of the
Services-Management and Service-Dominant (SM and SD) Theory and the framework that I developed.
Theory Identification, Introduction to the SM and SD Theory and Four Concepts
In the first part of the discussion section I will discuss two points. First, I will discuss the process
of identifying and the rationale for choosing the SM and SD theory; second, I will introduce the theory
and its four concepts.
Process of Theory Identification and Selection. To interpret and discuss my findings, I
considered using complex adaptive systems theory, organizational readiness for change theory, and
services management and service-dominant theory because aspects of each of these are related to my
findings. I selected the services management and service-dominant (SM and SD) theory (Osborn, Radnor
& Nasi, 2012) as the most appropriate framework for this integrative review for the following reasons.
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The rationale for selecting this theory was that the theory focussed on citizen and public engagement
throughout the process of policy development. The other two theories are more general theories are more
general theories not specific to the topic of PPE. Thus, SM and SD seemed most appropriate.
Additionally, I found the terminology (e.g., titles of the concepts) to be easily adapted to align with my
review findings and the APL competencies (see Table 1).
Introduction to SM and SD Theory and Theoretical Concepts. This theory was developed
because Osborne, et al. (2012) believed that traditional public management theory was outdated, what was
needed was a theory based on the current reality of public service delivery. The origins of public
management theory evolved conceptually from management research conducted in private manufacturing.
However, most public services such as health care, education, social services are all services rather than
manufactured “public products” – thus they are generally services to “support and enable the delivery of
intangible and process-driven public services” (Osborne, et al., 2012, p. 136). Moreover, traditional
public management theory is based on intra-organizational processes (e.g., internal processes), when the
current reality of public service delivery is based on inter-organizational processes (e.g., cross-sectoral
relationships and multiple systems of public service delivery).
The four main concepts in the SM and SD theoretical approach are (1) strategic orientation of
Public Service Organizations (PSOs), (2) role of marketing in public services, (3) co-production of public
services, and (4) the operational management of these services. I will briefly describe each concept.
The strategic orientation concept situates both the citizen and the user as key stakeholders of the
public policy and public service delivery processes whereby their engagement in the processes adds value
to both (Osborne, et al., 2012). Moreover, strategic orientation is also about understanding the needs and
expectations of citizens and service users. From a service-dominant approach, Osborne et al. (2012) posit
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that strategic orientation requires citizen engagement and user involvement at all phases of a (public)
service lifecycle – including policy development. Furthermore, PSOs in this context incorporate public
engagement as a core dimension in strategic orientation and implementation. Further, as a result of the
interactivity between PSOs and the public, valuable information is generated to support policy
formulation and implementation in the current and future state.
The second concept, the role of marketing public services is twofold. First, a marketing approach
helps to transform the intent of public service strategy into a commitment or promise – in other words,
fulfilling public service commitments. Second, what is essential about the role of marketing is that the
intent of a marketing approach is to maintain collaborative relationships and build trusted partnerships
between service users and PSOs (Osborne, et al., 2012).
The third concept, co-production, situates the service user experiences and knowledge at the heart
of effective public service design and delivery (Osborne, et al., 2012). For example, the service user
knowledge is encouraged and used to improve or develop new or existing services (Osborne, et al., 2014).
The concept of coproduction does not mean that PSOs and staff are excluded – rather, the insight(s) from
both user and public service is combined.
The fourth concept, operations management, focuses on Relationship Management (RM) as an
imperative. RM is described as increasing trust in on-going relationships and demonstrating genuine
interest in the welfare of others (Osborne et al., 2012). The fourth concept also includes quality
improvement methodologies such as “lean.” Lean is an operational management methodology originating
from the Toyota Motor Corporation and has been implemented into health services. Lean methodology
seeks to reconfigure internal organizational processes to reduce waste and improve internal efficiencies
(Osborne et al., 2012). Lean reform has been implemented in healthcare services and public services and
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achieved internal efficiencies. However, lean reform has failed in terms of meeting external effectiveness
and meeting the needs of external service users, citizens, and local communities (Radnor & Osborne,
2013). Osborn et al., (2014) argue “lean” continuous process improvement methodology is preoccupied
with internal measures of efficiency and satisfying internal customers rather than including external public
and value. Although there may be other quality improvement methodologies that include external
efficiencies and effectiveness this is outside the scope of this review.
This brief introduction to the SM and SD theory and its four theoretical concepts provides a
summary of the main points that are related to my review findings. Examples from the findings related to
the concepts included engaging citizens at all phases of policy development, maintaining collaborative
relationships and building partnerships, using citizen knowledge in co-producing improved public
services, and ensuring that there are ongoing relationships between internal government and organizations
external to government. I have re-named the four concept titles introduced above to align better with my
findings in this review. I also maintained the intent of each concept as described above and as outlined by
Osborne et al. (2012). The four concept title changes included, strategic orientation re-titled PPE in
policymaking; the role of marketing public services renamed public service collaboration; co-production
changed to PPE policy implementation; and operations management renamed interactive leadership for
PPE.
Discuss Findings, SM and SD Theory, and Introduction to the Framework.
In the second part of the discussion section I review the findings in the context of the SM and SD
theory and present the framework that I developed entitled, Integrated PPE Policy Framework for Public
Service and Nurse Leaders, hereafter referred to as the Framework (see Table 1). This section will be
presented in four parts that correspond with the four concepts of the theory, common influencing elements
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of PPE (identified in Appendix G) and, themes and findings from this review. I will discuss the
relationship of these concepts to the competencies from the University of Victoria, APL Masters of
Nursing Program in the significance of the findings section that follows. As previously mentioned I
changed the titles of the four concepts. The new titles, as reflected in Table 1 are PPE in policymaking,
public service collaboration, PPE policy implementation, and, interactive leadership for PPE policy.
Table 1. Integrated PPE Policy Framework for Public Service and Nurse Leaders
# Theory Concepts
Theory Elements
PPE Policy
influencing
factors from the
findings
PPE Policy Themes
Examples from the
findings
University of Victoria: Masters of
Nursing Advanced Practice
Leadership
Competencies and Indicators
1. PPE in
Policymaking
Government Role
1.0 Understand the
needs and
expectations of
citizens and service
users
Improve
collaboration
and knowledge
sharing
Recognize that the
immense knowledge
gleaned from public will
lead to better policies and
decisions will strengthen
democracy.
3. Advances professional nursing
practice. (Nurses/Nursing Sphere)
3.1 Role models relational integrity,
ethical component and a commitment
to scholarly inquiry and lifelong
learning.
1.1 Users as key
stakeholders
Patients/Public
Engagement
Legislation, regulation or
policy requirements for
health authority
accountability to
demonstrate community
consultation.
1. Demonstrates knowledge of and
engagement with leadership theories.
1.1 Articulates possibilities for
nursing leadership in 5 spheres
of influence: patient/client, nurse
and practice, interprofessional/
inter-sectoral health,
organizations, and health
systems/health policy. 1.2 Engagement adds
value to policy and
service delivery
processes
Policies /
Service delivery
process is more
accessible
and/or
responsive to
citizens
Provides government with
justification for public
spending and
strengthening the publics’
voice in decisions and
health service deliver.
1. Demonstrates knowledge of and
engagement with leadership theories.
1.3 Analyzes the influence of the
social, political and economic
environment and prominent
discourses / practices (such as
corporatization) on health care,
health policy, and nursing
practice.
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1.3 Users involvement
at all phases of
policy cycle
Inform
healthcare
system policy
throughout
policy process
PPE enables decision
makers to design policy
and programs tailored to
public needs; achieve
better results; and validate
outcomes.
3. Advances professional nursing
practice. (Nurses/Nursing Sphere)
3.2 Creates a culture of learning in a
focused area of nursing practice that
fosters a spirit of inquiry.
2. Public Service
Collaboration
Concept
Benefits and strategies of
PPE policy
2.0 Fulfilling public
service
commitment(s)
Governance,
accountability
and democratic
legitimacy,
mechanisms for
ongoing PPE
Gain valuable knowledge
through public
engagement that can lead
to better policies and
decisions and democracy.
4. Fosters collaborative working
relationships with diverse
stakeholders. 4.1 Promotes
interprofessional and inter-sectoral
communication to enhance patient and
staff safety, foster client-centred,
ethical and culturally safe practices,
and build collaborative teams and
coalitions.
2.1 Maintaining
collaborative
relationships
Improve
collaboration,
knowledge
sharing
Include actions to
strengthen public
ownership by embedding
patient experience
information in the system.
4.2 Communicates within nursing,
inter-professionally, and across sectors
in a timely, frequent, accurate,
succinct manner to create a climate of
shared goals and mutual respect.
2.2 Building trusted
partnerships
System Partner
(e.g., leadership,
shared decision
making, co-
design)
Challenge for
policymakers Recognize
the impacts of not
engaging the public such
as increased costs due to
stakeholder lobbying and
loss of public credibility.
4.3 Participates in, or leads, diverse
teams to improve client experiences or
outcomes and to initiate and/or support
evidence-informed policy changes.
2.3 Co-creating joint
improvement
More diverse
ideas /
perspectives/
Suggestions
Government Role
Acknowledge the value of
the engagement process.
4.5 Articulates an advanced nursing
perspective to diverse stakeholders
(colleagues, decision makers, public,
etc.) to address client needs, support
nursing decisions, and optimize
health-care provision.
3. PPE Policy
Implementation
Concept
Government Role in PPE
Policy
3.0 Innovation includes
seeking user
service knowledge
Better informed
decisions,
communication,
Incorporate shared policy
agenda setting to ensure
that policy proposals and
2. Demonstrates leadership abilities
in an area of nursing practice or
health care delivery. (Patient/Client
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to improve or
develop services
and more
diverse ideas.
decisions are co-jointly
created.
Influence) 2.1 Conducts systematic
and comprehensive assessments based
on the integration of theory, evidence,
research, and differing perspectives, as
a foundation for advanced reasoning
and/or decision-making.
3.1 Puts service user
experiences at the
heart of public
service design
Patient centred
care and
Citizens’ Rights
Challenge for
policymakers
Challenge for government
to incorporate PPE into a
policy process.
5. Fosters innovation to create
effective work environments
(Organizations Sphere) 5.6
Participates in the design and
implementation of new models for
nursing and/or healthcare delivery in
an area of practice.
3.2 User is at the heart
of the process
(social inclusion)
Patient centred
care
Government Role in PPE
Policy Ensure PPE as a
key strategic direction for
ensuring decisions and
priorities reflect the needs
of the citizens.
1. Demonstrates knowledge of and
engagement with leadership theories.
1.1 Articulates the possibilities for
nursing leadership across 5 spheres of
influence: patient/client,
nurses/nursing practice,
interprofessional/ inter-sectoral health,
organizations, and health systems /
health policy.
4 Interactive
Leadership for PPE
policy
Government Role in PPE
Policy
4.0 Interactivity
between internal/
external
stakeholders:
public service
transformation
Engage multiple
stakeholders at
all levels of the
policy process.
Ensure public is involved
in forming legislation for
durable decision-making.
Public’s are typically more
supportive of government
decisions if they know
their views were
considered.
6. Demonstrates leadership within
complex health systems (Systems/
Policy Sphere)
6.6 Participates in the development
and implementation of institutional,
local, provincial, or national health
policy.
4.1 Relationship
Management
Social Capital,
Democratic
Legitimacy
Challenges for
policymakers
Efforts need to be made to
raise patients’ awareness
about PPE benefits, and
support patients increasing
role in leadership.
4. Fosters collaborative working
relationships with diverse
stakeholders. (Interprofessional/
Inter-sectoral Sphere) 4.2
Communicates within nursing,
interprofessionally, and across sectors
in a timely, frequent, accurate,
succinct manner to create a climate of
shared goals and mutual respect.
Adapted from the Services Management and Service-Dominant Theory (Osborne, et al., 2012)
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(i) PPE in Policy Making Concept. The main premise of this concept is engaging the patients
and public in decision making throughout the policy process. I will first list the four elements in this
concept and then discuss relevant findings from this review. The four elements are (1) understanding the
needs and expectations of citizens and service users, (2) situating service users as key stakeholders, (3)
recognizing that engagement adds value to policy and to service delivery processes, and (4) involving
service users in all phases of the policy process. PPE in policymaking concept is congruent with the
findings in this review and I believe is very relevant to understanding how healthcare policy leaders and
decision makers support and value PPE in healthcare policy.
The first element in this concept is understanding the needs and expectations of citizens and
service users. The findings show that the PPE process in policy provides an effective way for
governments to better understand the needs and expectations of citizens and service users. Moreover,
governments can utilize the immense knowledge gleaned from the public through engagement for
developing better policies and decisions and to strengthen democracy (Department of Human Services,
Victoria Government, 2006; Edgaman-Levitan et al. 2013; Institute of Public Administration of Canada et
al. 2013; Kovacs-Burns et al. 2014; Sheedy, 2008).
The second element is situating service users as key stakeholders. The findings indicate that
governments are starting to hold to account health authorities, who are responsible for delivering
healthcare services, for implementing community consultation processes in the development of health
plans, strategic directions, and policy development (Directorate Office of the Chief Medical Officer,
Northern Ireland, 2007; House of Commons, Health Committee,2007; House of Commons Public
Administration Select Committee, 2013; Institute of Public Administration of Canada et al. 2013; Public
and Patient Experience and Engagement Team, 2011; Scottish Government, 2007). These processes
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situate service users and the public as key stakeholders at multiple levels and are an example of how
policy leaders within government support PPE in healthcare policy.
The third element is recognizing that engagement adds value to policy and to service delivery
processes. The findings show that by engaging citizens and the public in the policy process it can lead
government decision makers to make better decisions (Ansari & Andersson, 2001; Bovaird, 2007;
Cavaye, 2004; Lenihan, 2012; Scottish Government 2007; Sheedy, 2008). For example, government
decisions makers may not understand potential social or ethical implications of their decisions and by
engaging such populations they would have a greater understanding, thus leading to better informed
decisions (Sheedy, 2008).
The fourth element is involving service users in all phases of the policy process. The findings
indicate that by embedding PPE throughout the phases of the policy process, health system decision
makers are likely to address the right issues in an appropriate way and design programs, policy and
planning activities that closely align with the public needs (Kovacs-Burns, et al, 2014; Directorate Office
of the Chief Medical Officer, Northern Ireland, 2007; Warburton, et al., 2012).
In summary, the PPE in policy making concept is about PPE providing effective ways for
governments to understand the publics’ healthcare needs and expectations. Findings show that it is
important for government(s) to support PPE processes to ensure the user and/or public is a key
stakeholder at multiple levels throughout the policy process. The findings show that the benefits of PPE
policy included government leaders having a more comprehensive understanding of the issues about
populations that are affected by decisions and as a result lead to better informed decision making. Finally,
embedding PPE in the policy process healthcare decision makers may develop policy that is well aligned
with the public needs.
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38
(ii) Public Service Collaboration Concept. The main premise of this concept is fostering
collaborative working relationships with diverse stakeholders (including interprofessional and inter-
sectoral spheres). Developing collaborative ongoing relationships between government and organizations
and/or health users helps to develop trust and impact strategic decision making (Osborne, et al., 2012).
The four elements in this concept are building trusted partnerships, maintaining collaborative
relationships, co-creating joint improvements, and fulfilling public service commitments.
The findings in this review highlighted the importance of partnerships between the public and the
government public service in co-producing effective health service policy (Bovaird, 2007; Carmen, et al.,
2013; Cavaye, 2004; Department of Human Services, Victoria Government, 2006; Directorate Office of
the Chief Medical Officer, Northern Ireland, 2007; House of Commons Public Administration Select
Committee 2013; Lenihan, 2012; Scottish Government, 2007; Oxman, et al., 2009; Tritter & McCallum,
2006). Moreover, citizens and the public are viewed as partners who are “situated as essential
stakeholders of the public policy and public service delivery processes and their engagement in these
processes adds value to both” (Osborn, et al., 2012, p. 143).
Findings show that public engagement, building partnerships, and collaboration are required to
solve complex issues in healthcare policy (Directorate Office of the Chief Medical Officer, Northern
Ireland, 2007; Lenihan, 2012; Scottish Government., 2007). Neither governments nor any one
organization alone can provide effective solutions to healthcare in isolation. Lenihan (2012) suggests that
governments’ current multi-stakeholder environment requires high levels of collaboration across
organizational boundaries. The following example from the findings in this review show how
governments incorporate engagement in policy guiding documents. In Northern Ireland, the Department
of Health, Social Service and Public Safety circular document entitled, Guidance on Strengthening
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39
Personal and Public Involvement (PPI) in Health and Social Care provides specific direction for leaders.
The direction outlined in this document guides decision makers in improving the quality and effectiveness
of user and public involvement as an integral part of good governance and supporting a more patient and
user-centred health and social care system (Directorate Office of the Chief Medical Officer, Northern
Ireland, 2007). More specifically, the Guide outlines core values and principles, evaluation,
accountability and assessment processes, action planning, reporting and performance monitoring.
In summary, the public service collaboration concept illustrates the importance of fostering
relationships with multiple stakeholders throughout the policy process. The findings in this review
support the elements such as co-creating joint improvements, buildings trusted partnerships, and
maintaining collaborative relationships. The findings also show that no one organization alone can
provide effective healthcare solutions and fostering collaborative partnerships between the public and
government are required to solve complex issues in healthcare policy Neither governments nor any one
organization alone can provide effective solutions to healthcare in isolation. The findings also show that
patient and public involvement are integral to good governance.
(iii) PPE Policy Implementation Concept. The central theme of this concept is engaging service
users in a responsive and respectful way in policy processes to generate innovation, new ideas, and, better
informed decisions. The three elements in the PPE policy implementation concept are innovation includes
seeking user service knowledge to improve or develop services; put service user experiences at the heart
of effective public service design; and the user is at the heart of the process.
One of the findings shows that including user service knowledge for healthcare improvements is
central to the Strategy for Patient Oriented Research (Canadian Institutes of Health Research, 2014).
More specifically, the Patient Engagement Framework that was developed by the Strategy for Patient
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40
Oriented Research embraces patients as the heart of this strategy, by committing to involve the patient(s)
in all levels as partners to build a sustainable accessible and equitable health care system and positively
impact the health of Canadian citizens.
Also in Canada, the province of Nova Scotia’s Capital Health (2014) Engagement Policy (CH 04-
080) identifies citizen engagement and person-centered care as a key strategic direction for ensuring
decisions and priorities reflect the needs of the citizens. The policy document also provides expected
outcomes as a result of the implementation process such as leaders and staff accountabilities, increased
transparency, and public accountability. The Nova Scotia policy example reflects the elements in this
concept by developing a strategic direction to ensure the service user experiences are at the heart of
effective public service design and process – in other words, patient-centred care.
In summary, the core premise of the PPE policy implementation policy concept core premise is
about ensuring that government puts the service user and the public at the heart of policy and service
processes. This involves governments sharing the policy agenda in setting policy proposals that are co-
jointly created and implemented.
(iv) Interactive Leadership for the PPE Policy Concept. The core premise of this concept is
fostering interactive leadership between multiple internal and external complex systems to improve
relationships and experience with the healthcare system. Relationship management between diverse
groups of stakeholders is also a key element.
The findings from the review show that the need to involve diverse stakeholders (e.g., patients,
public and communities) in finding solutions to complex problems is being recognized by governments
(B.C. Office of the Auditor General, 2008; Boviard, 2007; Edgaman-Levitan, Brady & Howitt, 2013;
Martin, 2008; Sheedy, 2008). Historically, the policy making process has been reserved for policymakers
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
41
and government leaders. As previously mentioned, however, this process has been transformed from one-
way processes for policy makers and top decision makers to a process that includes negotiated outcomes
involving many interacting policy systems and coproduction among citizens, the public and multiple
stakeholders (Bovaird, 2007). The Global Health Partnership Framework describes this policy
development process change by emphasizing the importance of building relationships between
individuals, families, communities, healthcare professionals, and policymakers in areas such as research,
community health, organizational design and governance and public policy (Edgaman-Levitan, Brady &
Howitt, 2013).
Citizen engagement can require a shift in organizational or departmental cultural conceptions of
what citizens can bring to a policy process (Sheedy, 2008). Most governments recognize the value in
aligning their decisions with the views of the public constituents (B.C. Office of the Auditor General,
2008). Moreover, members of the public typically are more supportive of a government decision if they
understand it was made with the views of those who are most affected. As a result of these motives,
governments are increasingly engaging the public in a range of public participation activities in order to
be more transparent and validate that significant decisions have been made with external views in mind
(B.C. Office of the Auditor General, 2008). Provincial governments across Canada who believe public
participation is essential to durable decision-making have formed legislation or mandatory guidelines to
ensure that the public is involved (B.C. Office of the Auditor General, 2008).
Boivin et al. (2014) report that “public involvement resulted in mutual influence and greater
agreement between professionals and members of the public, yielding health care improvement priorities
that were better aligned with public expectations” (p. 321). Valuing the process and the diversity of
knowledge and experience of patients/public and health professionals is key to patient and public
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42
engagement mechanisms and health services improvements (Tritter & McCallum, 2006). In addition, one
of the core characteristics of consumer, carer, and community engagement is using knowledge as a
resource in co-producing value in healthcare system policy (Department of Human Services, Victoria
Government, 2006). These examples from the findings of this review fit with the interactive leadership for
PPE policy concept – particularly long-term mechanisms and partnerships between government
authorities, voluntary, public, and private sectors.
In summary, the interactive leadership in PPE policy concept’s main thrust is about the intentional
interaction between internal (government) and external (outside of government) systems to improve
relationships with diverse groups of stakeholders and improve their experiences with the healthcare
system. Policy-making involves complex political processes that are influenced by a multitude of internal
and external factors at multiple levels (Thurston, et al., 2005). The inter-related context of patient and
public engagement and healthcare system policy making is also influenced by a multitude of factors as
has been outlined in this section.
In the next section I discuss the strengths and limitations of this review followed by the
significance of the findings for advanced practice nursing leaders, nursing educators, and public service
professionals and policymakers. Next, the recommendation from the findings for future research is
discussed and is followed by the conclusion of this integrative review project.
Strengths and Limitations of this Project
Strengths of this Project. The findings of this study align with the concepts in the SM and SD
Theory outlined in the article by Osborne, Radnor and Nasi entitled, A New Theory for Public Service
Management? Toward a (Public) Service-Dominant Approach (2012). To my knowledge this is the first
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integrative review that addresses patient and public engagement, healthcare system policy within a
context of this theoretical approach and links with nursing leadership competencies.
The results show that the SM and SD Theory is a useful framework for gaining a preliminary
understanding the complexities of both patient and public engagement and healthcare systems policy. The
findings of this review also fit with the constructs of the four concepts of the theory. This theory has
allowed us therefore to better understand the influencing factors of PPE, the levels of engagement and
policy, and some of the reasons why healthcare policymakers are engaging patients and the public.
As I was developing the Framework, I found the alignment between the concepts, elements,
influencing factors, themes, examples, and, the APL nursing competencies and indicators were
remarkably interconnected. The interconnected linkages may help nursing leaders to reflect on how APL
nursing competencies can be part of PPE policy processes. Moreover, the Framework may help inform
nursing leaders, policymakers, and, public service professionals in developing policies that support patient
and public engagement in health and healthcare policy processes.
Limitations of this Project. The vast majority of the sources reviewed relied on self-reported
factors that may not be generalizable to other countries, provinces or regions, and may be vulnerable to a
variety of bias, such as reporter, information and socio-political context biases. Another limitation of this
integrative review was that I excluded patient and public engagement policies about specific population
groups (e.g., Mental Health/Substance Use, First Nations/Métis, HIV/Aids) where there may have been
learning to inform my results. Also, this integrative review was completed and designed by one person –
myself. Prior and during the completion of this project, I was seconded from a regional health authority to
the B.C. Government Ministry of Health as the Provincial Director of Patients as Partners charged with
responsibility of leading the policy and program provincially. Examining my beliefs and prior exposure to
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the field of PPE, I conclude that I am very keen to have patients, public, and, families involved in all
aspects of healthcare and health systems policy, and therefore, I might have introduced personal bias to
this project. On the other hand, a careful read of the literature and my analysis indicates that the literature
supports this belief.
One of the weaknesses of the framework is that it was also developed by only one researcher
(myself) and has not involved public policymakers, patients, families, caregivers, or other researchers. In
conducting the integrative review, I found there was not any one framework for PPE. Therefore, the
framework that I developed is a blend of frameworks I have reviewed that have influenced my thinking. I
chose the SM and ST theory because it really helped interpret the findings and begin to help answer the
question in this integrative review: do PPE policies make a difference in the healthcare system? The
findings in this review begin to also answer the question: what is the existing knowledge and actions that
healthcare leaders and policymakers need to know about PPE healthcare system policy? This theory also
helped to link the findings, the APL nursing competencies, and government policy and services.
Significance of the findings for Advanced Practice Nursing Leaders. Within the APL Program
option at the University of Victoria, Masters of Nursing students are prepared for a dual career focus,
advanced clinical practice and nursing leadership. The APL curriculum is informed by the University of
Victoria, Master of Nursing (MN) curriculum framework, the CNA Pan-Canadian Core Competencies for
the CNS (2014), the CASN National Nursing Education Framework (2014), a health equity lens, and a
spheres of influence model adapted from Fulton, Lyon, and Goudreau (2014). The APL option courses are
developed from the core courses of the MN program that focus on advanced nursing practice, disciplinary
scholarship, and, research competencies. The APL competencies and indicators include policy in
competencies and indicators.
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From a nursing leadership perspective, I find it interesting that for a long time nurses have valued
the formation and implementation of health policy yet few nurses practising in clinical setting perceive
health policy to be a nursing issue or engage in policy debates (Toofany, 2005). Although there is
recognition that nurses and nursing are well positioned to influence policy and political decision-making,
there is also a need for greater support from nursing leaders and nursing organizations for nurses to gain
more knowledge about influencing and shaping health and healthcare policy (Fyffe, 2009). There is also
recognition of the need for nursing leaders to have core competencies and training in the area of policy
awareness, policy formation processes, and the basics of government processes and healthcare (Ferguson
& Drenkard, 2003).
The findings of this integrative review have relevance for advanced practice nursing leaders
involved in or who want to be involved in policy and PPE. This may include nurses developing and
providing strategic health policy direction as well as those offering nursing leadership, providing nursing
education, developing policy, or conducting research. There were many APL nursing competencies and
indicators that aligned with the findings of this review and the SM and SD theoretical concepts. The
following four examples are discussed with the intention of showing the significance of these
competencies in the direction of PPE policy and to emphasize the nursing role in the policy process.
The first example is the APL nursing competency indicator, creating a culture of learning in
nursing practice that fosters a spirit of inquiry. This competency aligns with findings in the review that
show PPE enables health system decision makers to address the right issues in an appropriate way, and to
design programs, policies, and planning that correspond to public needs. This example shows that
decision makers are creating a culture of learning by engaging patients and the public (or inquiring) to
develop policy that closely reflect the publics’ needs. My personal nursing practice working in provincial
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government aligned me with the competency indicator mentioned above and these findings. For example,
I believe it is essential to engage patients, families, communities, and external organizations in prominent
discourses on healthcare policy with senior levels of government. I was distinctly aware of the
opportunity for creating a culture of learning and inquiry about PPE in the policy development process
within government, particularly, when engaging patients, families, and communities in government
processes was not always well understood by my public service colleagues. Yet, some of these colleagues
having been provided the opportunity to address issues, concerns, and questions were ready, willing, and
supportive of adopting PPE to better inform decisions, planning, and policy.
The second example is the nursing APL competency, fostering collaborative working
relationships with diverse stakeholders (including interprofessional and inter-sectoral spheres). This
competency is also aligned with the results in my review, specifically, the main premise of the public
service collaboration theoretical concept. The key elements in this concept are about maintaining
collaborative relationships, building trusted partnerships and co-creating joint improvements. Moreover,
the findings showed that government can gain valuable knowledge through public engagement leading to
better policies and decisions and a strengthened democracy. Reutter and Duncan (2002) posit that
elements such as inter-sectoral collaboration and citizen participation are particularly relevant for nurses
and nursing in developing and enacting policy. It is my hope that nurses will commit to the application of
PPE and to create a culture of learning and inquiry in collaboration with government healthcare
policymakers, other organizations, patients, families, and the public.
The third APL competency and indicator that interlinks with the review findings was
demonstrating knowledge of and engagement with leadership theories (e.g., articulating the possibilities
for nursing leadership across five spheres of influence patient, nursing practice, inter-sectoral,
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organizational, and health systems and health policy). The PPE policy implementation theoretical concept
is about the government leadership role to ensure the service user at the heart of the process and is
embedded in key strategic directions for supporting engagement and ensuring decisions and priorities
reflect the needs of the citizens. Articulating the possibilities for nursing leadership across multiple
levels of influence (including patients, families and the public) in healthcare policy is congruent with the
PPE policy implementation concept and the previously discussed public service collaboration concept.
What this means to me is that nurses have an integral role in the healthcare policy discourse and in
articulating the possibilities in collaboration with multiple stakeholders and the public in the healthcare
policy agenda.
The fourth APL nursing competency, demonstrating leadership within complex health systems,
whereby nurses participate in the development and implementation of policy at multiple levels is
particularly aligned with the findings in this review and the theoretical concepts. The findings from my
review show that interactivity between internal governments and external patients or public in other words
PPE is seen as a mechanism for public service reform (House of Commons, Health Committee, 2007;
House of Commons Public Administration Select Committee, 2013; Public and Patient Experience and
Engagement Team, 2011; Scottish Government, 2007; Tritter, & Kolvusalo, 2013).
The findings also that show that the public is typically more supportive of government decisions if
they understand it was made with their views in mind. Additionally, as a result of these motives,
governments are increasingly engaging the public in a range of public participation activities in order to
be more transparent and increase confidence about significant decisions that have been made with
external views in mind (British Columbia, Office of the Auditor General, 2008; Government of
Newfoundland and Labrador, n.d.; Mackinnon, 2003; Mullen, Hughes & Vincent-Jones, 2011). The
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findings in my review show that benefits include improved democratic legitimacy, governance, policy
implementation and staff morale as well as improved peoples’ experience with the healthcare system and
knowledge of complex issues, and increased citizens’ sense of responsibility. Nurses are well situated to
provide a leadership role within the complexity of health care transformation and to work at multiple
levels within government and healthcare service delivery.
Significance of Findings for Nursing Educators. I am very encouraged to learn that education
in health policy processes and experiential internships for nurses has been recommended for integration in
the undergraduate BSN curricula (Reutter & Duncan, 2002). What are the best ways to prepare nurse
leaders with the necessary awareness, political insights, and collaborative mind-sets to share leadership,
organizational dynamics, and strategic skills to enact health care policy? There is a multitude of ways that
schools of nursing education leaders have implemented the above recommendation. For example, George
Mason University, and Inova Health System developed an accredited 5-day Institute that provided an
overview of how government systems work. Course requirements for nursing leaders included writing to
Congress, editors and policy makers in the area of interest, crafting legislation, and completing a personal
career portfolio outlining action plans for developing policy experience (Ferguson & Drenkard, 2003).
The Royal College of Nursing provides a Political Leadership Programme, the United States has adopted
a range of strategies intended to support nursing’s influence in shaping policy, and, the International
Council for Nursing supports efforts to improve the preparation of nurses for leadership and policy
development (Fyfee, 2009). The College of Registered Nurses of British Columbia, Professional
Standards for Registered Nurses and Nurse Practitioners includes articulating and supporting the
translation of knowledge gained from research into policy and practice (College of Registered Nurses of
British Columbia, 2015).
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According to Hewison (2008), however, there are approximately 2.6 million practising nurses that
need to improve their level of influence in the policy making process. Moreover, in the UK it has been
reported that few nurses practicing in clinical settings are involved in policy or perceive health policy to
be a nursing issue (Toofany, 2005). Nurses in Canada continue to enjoy a high level of the public’s trust;
however, at the same time nurses are challenged to strengthen their collective capacity in political
processes (Duncan, Rodney, & Thorne, 2014). There is considerable work to be done to transform the
healthcare system – healthcare policy is a critical part of this work. I would recommend that nurse
educators offer a healthcare policy development course for graduate nursing students. In addition to
George Mason University accredited 5-day Institute and The Royal College of Nursing Political
Leadership Programme, Reutter and Duncan (2002) describe a graduate nursing course for promoting
health policy. The Reutter and Duncan course curriculum includes inter-sectoral collaboration, citizen
participation, and policy communities and networks as part of the course content. Their goal however, is
to develop activists’ roles for advanced practice nursing and leadership and their curriculum foci also
included coalition advocacy and media advocacy. Based on my experience, I believe that developing a
nursing masters level course that included a focus on developing policy competencies and patient and
public engagement would add to the knowledge base for all graduate nursing students about healthcare
legislation, regulation, and policy processes, development, implementation, and accountability. Based on
my experience and the findings of this review, I would also recommend that a policy development course
for graduate nursing students include PPE policy. I believe a course on healthcare policy would provide
graduate nurses with the knowledge about how organizations, service users, and the public can engage as
part of the healthcare policy development and implementation process as well as the benefits of PPE
policy.
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In conversations throughout the graduate nursing program, I have learned that my fellow students
had minimal understanding or experience in the area of healthcare policy and that currently there are
organizations, service users, and the public who are engaged in healthcare policy process development.
Increasing my awareness about my fellow students understanding was important for broadening my
personal perspective; it helped me reflect about a lack of knowledge that may lead to reluctance for nurses
to engage and collaborate with multiple partners in the process of developing healthcare policy. Relating
this to my project findings, there is a need to involve diverse stakeholders in creating solutions to complex
policy problems and I believe nurses need be more of a part in this collaborative process.
Significance of the findings for Public Service Professionals and Policymakers. From my
experience in nursing practice and provincial government as a public service professional including a
public service policymaker, I would suggest the following findings may be significant to public service
professionals including policymakers. The two main findings in this review that I believe are most
significant are improving competencies of public service professionals and changing the culture in public
service to ensure a more flexible system for PPE policy processes. I will briefly discuss these findings.
First, findings show that improving competencies of public service professionals require new roles
of public service professionals that include expertise in PPE and developing collaborative partnerships
within public service and also with external organizations. Collaborative relationships between traditional
public service professionals, service managers, and the political decision makers who shape the strategic
direction of the service system can provide opportunities to broker new roles in public service (Boviard,
2007). One recommendation that I would suggest is to include expertise in PPE policy development and
implementation, and collaborative partnerships with external stakeholders, in government policymaking
and leadership job descriptions. Another recommendation I would suggest for government includes
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51
developing PPE policies that defines the intention and incorporates accountability and reporting
mechanisms. For example, in Australia, the Victoria Government Doing it with us not for us participation
policy specifies the intent to improve health policy and planning, care and treatment, and the wellbeing of
all Victorians (Department of Human Services, Victoria Government, 2006).
Findings in this review show that there is a need to change the culture within government to be
more a flexible for PPE policy processes. In order for a cultural shift to take place, Cavaye (2004)
suggests there is a need for people to develop mindsets that support the structures of PPE. Moreover,
authentic engagement requires new thinking with regards to different assumptions, values, and principles
than has been in the traditional healthcare delivery approach. Findings also indicated a need for leaders in
government to improve listening skills and incorporate these skills into the PPE dialogue.
Recommendations from the findings for Future Research
There were a number of research recommendations that emerged in this review. These included
the need for research to improve: furthering the development of public engagement at multiple levels,
their specific impact and interconnection (Bovaird, 2007); and contributing to more effective health
services to ultimately, improve the quality of life of Canadians and strengthen the national health care
system (Canadian Institutes of Health Research, 2014). Further, there is a requirement for more
consistent definitions of PPE, that link empirical research with theory and using pre-specified hypothesis,
using multidisciplinary perspectives and mixed evaluation methods (Boivin, et al., 2014). Another
recommendation is that researchers examine the link between citizen participation and accountability for
decision making (Thurston, et al. 2005). There is still much to be done to develop, monitor, and evaluate
models of citizen participation its impact on the health system and the health of the population across
different settings and circumstances (Thurston, et al., 2005). More quantitative evaluation designs would
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contributed significantly to our understanding of the effectiveness of PPE policies and processes. Future
research could also include exploring how specific groups experiencing health conditions (e.g., Mental
Health/Substance Use, Methadone Maintenance Treatment, HIV/Aids) address PPE policies.
Additionally, future research could also include how First Nations/Métis address patient and public
engagement policies.
Conclusion
This integrative review project critically appraised literature and sources regarding PPE policy and
its potential impact on the healthcare system. The findings point to the significance of engaging the
patients, citizens, and the public at multiple levels of health system policy processes and implementation.
The significance of PPE in the policy processes and implementation have been articulated with the intent
to position nurses, healthcare leaders, researchers, policy makers, and patients and families to work
together co-create a more sustainable healthcare system.
One of my goals in this integrative literature review was to develop a conceptual framework that
can inform the future design of patient and public engagement in healthcare system policy. The PPE and
Policy framework in the context of the SM and SD Theory and APL Competencies presented in this
review may provide a preliminary foundation for constructing new models of patient and public
engagement in healthcare system policy. I believe this theory may also provide policy makers and nurse
leaders a starting point for linking management theory in government and patient and public engagement
in policy-making thus making a more succinct arguable policy.
The specific question I asked in this integrative review is: Do PPE policies make a difference in
the healthcare system? I would suggest the findings support that PPE policies do make a difference.
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However, the findings in this review are far from the final word and are offered as a contribution to the
ongoing debate.
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Appendix A
Interchangeable terms and common elements for the concept of patient and public engagement
Citation Terms 15 Common Influencing Factors: associated with patient and public engagement
Terms associated with Patient
and Public Engagement
Act
ion(s
)/
acti
vit
ies/
Act
ive
role
Inte
ract
ion(s
)
Pat
ients
as
Equal
Par
tner
s A
ppro
ach
Pt.
Voic
e/C
hoic
e/
Rep
rese
nta
tion
Com
ple
x /
lack
of
Cla
rity
/mult
iple
def
init
ions
Conte
xt/
conce
pt
Co-d
esig
n
/co-o
per
atio
n /
shar
ed d
ecis
ion
mak
ing
Exper
ience
Involv
e/In
volv
ed
Mec
han
ism
/Pro
ces
Org
aniz
atio
nal
Cult
ure
Chan
ge
Qual
ity
impro
vem
ent(
s)
Coll
abora
tive
Rel
atio
nsh
ip(s
)/
Par
tner
ship
(s)
Poli
cy /
Man
dat
ed/
Volu
nta
ry
(Re)
Solu
tion t
o
the
pro
ble
m(s
)
Spec
trum
of
Pra
ctic
es/
Met
hods/
Lev
els
Carmen et al. (2013). Patient/Family Engagement X X X X X X X X X X X X X X X
Tritter, McCallum & Alison. (2006). User/citizen Involvement X X X X X X X X X X X X X X X
Forbat, et al. (2009) Patient Engagement X X X X X X X X X X X X X X X
Kreindler. (2009). Patient Involvement X X X X X X X X X X X X X X X
Hudson. (2014). Public/Patient Engagement X X X X X X X X X X X X X X X
Maruer, et al. (2012). Patient/Family Engagement X X X X X X X X X X X X X X X
NHS Buckinghamshire. (2010). Patient/Public Involvement X X X X X X X X X X X X X X X
Barnes, Newman, Sullivan. (2004). Public Participation X X X X X X X X X X X X X X X
Health Canada. (2000). Public Involvement X X X X X X X X X X X X X X X
British Columbia Provincial Government (2011) Patient/Public Engagement X X X X X X X X X X X X X X X
Canadian Institutes of Health Research. (2014). Patient Engagement X X X X X X X X X X X X X X X
Health Council of Canada. (2011). Engagement X X X X X X X X X X X X X X
Mullen, Hughes & Vincent-Jones. (2011). Patient/ Public Involvement /
Public Participation
X X X X X X X X X X X X X X
Warburton, Wilson & Rainbow. (2011). Public Engagement X X X X X X X X X X X X X
Hogg. (2007). Patient/Public Involvement X X X X X X X X X X X X X
Mitton, et al., (2009). Public Engagement X X X X X X X X X X X X X
Litva et al.. (2002). Participation X X X X X X X X X X X X X
Reddel &Woolcock. (2004). Citizen Engagement/
Participatory Governance
X X X X X X X X X X X X X
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
66
Citation Terms 15 Common Influencing Factors: associated with Patient and Public Engagement
Terms associated with Patient
and Public Engagement
Act
ion
(s)/
Act
ivie
s
Inte
ract
ion
Act
ive
Act
ivat
ion
Ro
le
Pat
ien
ts a
s E
qu
al
Par
tner
s
Pat
ien
t V
oic
e
cho
ice
rep
rese
nta
tio
n
Co
mp
lex
/Lac
k o
f
Cla
rity
, M
ult
iple
Ter
ms
Co
nte
xt/
Co
nce
pt
Co
-
des
ign
/op
erat
ion
/
shar
ed d
ecis
ion
mak
ing
Ex
per
ien
ce
Inv
olv
e/In
vo
lved
Mec
han
ism
/Pro
ces
s Org
aniz
atio
nal
Cu
ltu
re /
So
cial
Ch
ang
e
Qu
alit
y
imp
rov
emen
t
Co
llab
ora
tiv
e
Rel
atio
nsh
ip(s
)/
Par
tner
ship
(s)
Po
licy
/Man
dat
ed
Leg
/V
olu
nta
ry
So
luti
on
to
th
e
pro
ble
m(s
)
Sp
ectr
um
of
Pra
ctic
es/
Met
ho
ds/
Lev
els
Bovaird. (2007). Public Engagement Involvement X X X X X X X X X X X X
Deverka et al. (2013). Stakeholder Engagement X X X X X X X X X X X X
Abelson et al. (2007). Public Participation X X X X X X X X X X X X
Barello, Graffigna & Vegni. (2012). Patient Engagement X X X X X X X X X X X X
Baker. (2007). Patient Involvement X X X X X X X X X X X X
South, J. (2007). Patient/Public Involvement X X X X X X X X X X X X
Church et al.. (2002). Citizen Participation X X X X X X X X X X X X
Brosseau & Verma. (2011). Patient Engagement X X X X X X X X X X X X
Reseman, et al., (2013). Engaging Patients X X X X X X X X X X X
Boivin, Lehoux, Burgers & Grol. (2014). Public Involvement X X X X X X X X X X X X
Gallivan, et al. (2012). Patient Engagement X X X X X X X X X X X
Simmons & Birchall. (2005). Participation X X X X X X X X X X X
Kovacs Burns, et al., (2014). Public Involvement/Engagement X X X X X X X X X X X
Ansari & Andersson. (2011). Public Participation X X X X X X X X X X X
Vahdat, et al. (2013). Public Participation/Involvement X X X X X X X X X X X
Center for Advancing Health. (2010). Patient Engagement X X X X X X X X X X
Newman, Barnes, Knops & Sullivan. (2004). Public Participation X X X X X X X X
Rowe & Frewer. (2005). Public Participation X X X X X X X X
Petriwskyj, Gibson & Webby. (2014). Client Engagement X X X X X X X
Nease, Glave Frazee, Zarin & Miller. (2013). Patient Engagement X X X X X X
Bruni, Laupacis & Martine. (2008). Public Engagement X X X X X X
Total % 90 73 83 76 73 75 86 93 73 70 53 80 85 78 70
Ranked Number of elements - highest to lowest 2 10 5 8 10 9 3 1 10 11 12 6 4 7 9
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
67
Appendix B
Patient and Public Engagement Frameworks
# Reference Framework Levels of Engagement (Individual) Levels of Engagement
(Community/Organization)
Levels of Engagement (System)
1 Carmen,
et al.
(2013).
A Multidimensional
Framework For Patient And
Family Engagement In
Health And Health
Care
Direct Care: Consultation - Patients
receive information about a diagnosis
Involvement – Patients asked about
preferences of treatment. Partnership and
Shared Leadership – Treatment decisions
are based on patient preferences, medical
evidence and clinical judgement.
Organizational Design and Governance:
Consultation – Organization surveys
patients about their care experiences
Involvement – Hospital involves patients as
advisors. Partnership and Shared
Leadership – patients co-lead safety and
quality improvement committees
Policy Making: Consultation –public agency conducts focus groups
with patients to ask opinion about a healthcare issue Involvement –
Patients’ recommendations about research are used by public
agency to make funding decisions Partnership and Shared
Leadership – Patients have equal representation on committee’s that
make decisions about how to allocation of resources.
2 B.C..
Office of
the
Auditor
General.
(2008).
A Public Participation
Framework
(Adapted from Health
Canada and International
Association of Public
Participation)
Level 1: Inform – low level of influence.
Objective: To provide balanced/objective
information to support understanding by
the public. Level 2: Gather information
Objective: Listen to obtain feedback on
analysis, alternatives and/or decisions.
Level 3: Discuss - Mid level of public
participation and influence.
Objective: To work with the public to
ensure that concerns and aspirations are
understood and considered.
Level 4: Engage Objective: To facilitate discussions and
agreements between public parties to identify common ground for
action and solutions.
Level 5: Partner – High level of public participation and influence.
Objective: To create governance structures to delegate decision-
making and/or work directly with the public.
3 BC
Ministry
of Health.
Amended B.C. Ministry of
Health Patients as Partners
Charters (2011, 2015)
Individual: Activated patient – involved in
their own health – self-management Patient
–centred care – system is responsive,
respectful, and collaborative.
Community Services, patients, families,
strategic partners engaged in design,
delivery and evaluation of health care
programs and community services.
System Redesign - Engagement of patients, families, caregivers,
communities, strategic partners in policy development or healthcare
system redesign. Patients, families, caregivers, communities,
partners in governance.
4 Maloff,
Bilan &
Thurston.
(2000).
Calgary Regional Health
Authority (CRHA)
Information: Public is informed;
clarification/communication of decision is
made. Input: Public’s opinions may be
used in decision making by CRHA
Consultation: Public’s informed publics’
perceptions may be used in decision
making. Consultation is interactive.
Decision making remains with CRHA.
Partnership: Public participates in a partnership process. Joint
decision making between the CRHA and the public.
Delegation: Decision making is delegated to the public.
5 Wait &
Nolte.
(2006).
Participation ladder
Adapted from Brager and
Sprecht, 1973; building on
Anstein (1969).
Received information: Organization
announces a plan. Community is convened
for information purposes. Compliance is
expected. Is consulted: Organization tries
to promote a plan. Seeks to develop
support to facilitate acceptance to plan.
Advises organisation: presents a plan and
invites questions. Prepared to modify plan
if necessary. Plans jointly: presents
tentative plan subject to change from those
affected. Expect to change plan at least
slightly or perhaps more subsequently.
Has delegated control: Organization identifies and presents a
problem to the community, defines the limits and asks community
to make a series of decisions, which can be embodied in a plan it
can accept. Has control: Organization asks community to identify
the problem and to make all the key decisions on goals and means.
Willing to help community at each step to accomplish goals.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
68
Appendix C
Guiding framework for critiquing qualitative literature
Author/Article ______________________________ Year
Elements Questions Total
Score
Article
Score
Elements influencing believability of the research
Writing style Is the report well written – concise, grammatically correct, avoids the use of
jargon? Is it well laid out and organized?
2
Author Do the researcher’s qualifications/position indicate a degree of knowledge in
this field?
1
Report Title Is the title clear, accurate and unambiguous? 1
Abstract Does the abstract offer a clear overview of the study, including the research
problem, sample, methodology, findings and recommendations?
2
Elements influencing Robustness of the research
Phenomenon of
interest
Is the phenomenon to be studied clearly identified?
Are the phenomenon of interest and the research question consistent?
3
Purpose Is the purpose of the study/research question clearly identified? 2
Literature
Review
Has a literature review been undertaken? Does it meet the philosophical
underpinnings of the study? Does the literature review fulfil its objectives?
3
Theoretical
Framework
Has a conceptual or theoretical framework been identified? Is the framework
adequately described? Is the framework appropriate?
3
Method/
philosophical
underpinnings
Has the philosophical approach been identified? Why was this approach
chosen? Have the philosophical underpinnings of the approach been explained?
3
Sample Is the sampling method and sample size identified? Is the sampling method
appropriate? Were the participants suitable for informing research?
3
Ethical
considerations
Were the participants fully informed about the nature of the research? Was the
autonomy/confidentiality of the participants guaranteed? Were the participants
protected from harm? Was ethical permission granted for the study?
4
Data
collection/data
analysis
Are the data collection strategies described? Are the strategies used to analyse
the data described? Did the researcher follow the steps of the data analysis
method identified? Was data saturation achieved?
4
Rigour Does the researcher discuss how rigour was assured? Were credibility,
dependability, transferability and goodness discussed?
2
Findings/
discussion
Are the findings presented appropriately? Has the report been placed in the
context of what was already known of the phenomenon? Has the original
purpose of the study been adequately addressed?
3
Implications/
recommendation
s
Are the importance and implications of the findings identified? Are
recommendations made to suggest how the research findings can be developed?
2
References Were all the books, journals etc., alluded to in the study accurately referenced? 1
Total 39 Adapted from Coughlan, Cronin, and Ryan (2007). Maximum total score is 39. High: 36-39; Medium: 26-35; Low: 25-1.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
69
Appendix D
Guiding framework for critiquing secondary/grey literature
Author/Article/Document/Report ______________________________ Year
Type of Secondary/Grey Literature X Type of Secondary Research X
Government Documents Reference Books
Official Statistics Research Institutions
Technical Reports Universities
Scholarly Journals Libraries, Library Search Engines
Trade Journals Computerized Databases
Review Articles Dissertation/Thesis
Critique Evaluation Tool for Secondary Research
Elements Questions Total
Score
Article
Scores
Elements influencing believability of the Secondary research
Writing style Is the report well written – concise, grammatically correct, avoids
the use of jargon? Is it well laid out and organized?
2
Author(s)/
Source(s)
What are the authors/sources qualifications/position/credentials
indicate a degree of knowledge in this field? Past works/writings.
Reliable sources of information.
1
Report Title Is the title clear, accurate and unambiguous? 1
Elements influencing Robustness of the Secondary research
Secondary Source Does the report reference primary sources? 1
Phenomenon of
interest
Is the phenomenon to be studied clearly identified?
Are the phenomenon of interest and the research question
addressed?
3
Methods
Does the article have a section that discusses the methods used to
conduct the study? Are the methods sound? Why was this approach
chosen?
3
Is the document or
report well-
referenced?
When data and/or figures are given, are they followed by a footnote,
endnote -- which provides a full reference for the information at the
end of the page or document -- or the name and date of the source.
2
Do the numbers
make sense?
For the purpose of secondary data analysis, the aggregated
percentage figure, rather than the number of “cases” reported,
should be used.
1
Theoretical or
Conceptual
Framework
Has a conceptual or theoretical framework been identified? Is the
framework adequately described? Is the framework appropriate?
2
Publication Date When was the source published? Is the source current or out-of-
date?
1
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
70
Data
collection/data
analysis
Are the data collection strategies described? Are the strategies used
to analyse the data described? Was data saturation achieved? Does
the report/document accurately relate information from primary
sources?
4
Intended Audience Is the intended audience stated? Is the publication aimed at a
specialized or a general audience? Is the source too elementary --
aimed at the general public?
3
Coverage of
Document/Report
What is the Coverage of the Report or Document? Does the work
update other sources, substantiate other materials/reports, or add
new information to the topic area?
2
Credibility Were credibility, dependability and transferability discussed? 2
Findings/discussion Are the findings presented appropriately? Has the report been
placed in the context of what was already known of the
phenomenon? Has the original purpose of the study/document been
adequately addressed?
3
Conclusions/implic
ations and
recommendations
Are the importance and implications of the findings identified?
Are recommendations made to suggest how the research findings
can be developed?
2
Sample Is the sampling method and sample size identified?
Is the sampling method appropriate?
2
Total 35
Adapted from McCaston, M, K., (2005)
Total scores are 35. High: 33- 35; Medium: 25-34, Low: 24-1.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
71
Appendix E
Summary of Data Extraction
Author/
Country
Subject of the
Article/Source M
ethod a
nd S
etti
ng
(Reg
ional
,
Pro
vin
cial
, N
atio
nal
)
Findings
Engag
emen
t L
evel
s
Indiv
idual
,
Com
munit
y, S
yst
em
Limitations Implications/
Recommendations
1 Meads,
Griffiths,
Goode,
Iwami,
(2007)
UK
Bolivia,
Brazil,
Chile,
Columbia,
Costa Rica
Mexico,
Peru,
Venezuela
Examine the
management
of policies for
PPI in Latin
American
health systems,
identify
common
features and
describe local
practice
examples that
are relevant to
the UK
Qual
itat
ive
Cas
e S
tudie
s
Nat
ional
Six common factors were
identified in Latin
American policies for
stronger patient and public
involvement. The most
significant transferable
learning for the UK
relates to the position and
status of professions and
non-governmental
agencies. S
yst
em May not be
generalizabl
e to other
countries /
states
Specific to policy
makers regarding
implementation:
findings indicate the
need for a
multidimensional
approach to local
engagement which
emphasizes enabling
influences and not
over reliant on either
particular structures
or issues.
2 Bovaird,
(2007)
England
Brazil
France
A conceptual
framework for
understanding
the emerging
role of user
and
community
coproduction.
Case studies
illustrate how
different forms
of
co-production
have been
implemented
in practice.
Qual
itat
ive
Cas
e st
udie
s
Nat
ional
Policy is not reserved for
policy planners and top
decision makers and is
currently viewed as the
negotiated outcome of
many interacting policy
systems. Similarly, the
delivery and management
of services is no longer
just the domain of
professionals and
managers — users and
other members of the
community are having a
more important role in
shaping decisions and
outcomes.
Com
munit
y , S
yst
em Some
limitations
of
coproductio
n emerge in
each of the
case
studies; the
implications
results may
not be
generalizabl
e.
A new type of public
service professional
is needed (e.g.,
coproduction
development officer)
to help: broker new
roles for
coproduction
between traditional
service professionals
and political
decision makers.
Empirical research is
needed on PPE at
multiple levels to
show specific impact
and interconnection.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
72
3 Conklin,
Morris,
Nolte,
(2012)
Europe
England,
Canada,
USA
Northern
Ireland
Review peer-
reviewed
empirical
evidence on
out-comes of
public
involvement in
health-care
policy
Qual
itat
ive
R
esea
rch
Nat
ional
How did public
involvement influence
decision making?
Recommendations were
accepted and
implemented; practical
changes/improvement was
achieved and priorities
identified through a public
involvement activity.
Changes evolved into a
regional programme
and/or resulted in new
financial leveraged
opportunities for new
services (e.g., speaks to
spread or scalability).
Syst
em
Search
restrictions
(e.g., small
number of
databases,
published
peer-
reviewed
literature
only) may
have missed
a wider
body of
evidence
reported in
the grey
literature.
From a policy
perspective, there is
a need for robust
evaluation and a
better evidence base
re: consistent
approach regarding –
public involvement
process
improvements and/or
outcomes of decision
making and policy.
Recommendation
included: evidence
about what type of
public involvement
makes a difference
in what context(s).
4 Oxman,
Lewin,
lavis,
Fretheim
(2009)
SUPPORT
UK
(England,
Wales,
Northern
Ireland)
Address
strategies to
inform and
engage the
public in
policy
development
and
implementatio
n
Qual
itat
ive
Res
earc
h
Sch
ola
rly J
ou
rnal
Nat
ion
al, S
tate
Involvement was
classified 3 ways,
consultation,
collaboration, and
consumer control.
Consultation -
consumers are asked for
their views to inform
decision making.
Collaboration is active,
ongoing partnerships with
consumers (e.g.,
committee members on
the health boards or
regulatory committees).
Consumer control,
consumers develop and
advocate or implement
health policies
themselves.
Indiv
idual
Com
munit
y S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretation of
examples
Formal
mechanisms/method
s of decision making
may help to ensure
appropriate forms of
collaboration.
Without these it may
be difficult to judge
whether public
involvement has had
any influence at all.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
73
5 Lenihan,
(2012)
Canada
Australia
Explore new
ways of
thinking about
how
governments,
stakeholders,
communities,
and ordinary
citizens can
work together
—collaborate
—to find and
implement
solutions to
complex
problems (e.g.,
failure to
innovate).
Gre
y L
iter
ature
Reg
ional
, P
rovin
cial
, N
atio
nal
Policy process design
helps decision-makers test
ideas to find the right one.
Collaborative policy-
making is about building
and managing the
relationships among all of
the players involved and
implementing the right
ideas (e.g., process
matters). Collaborative
partnerships transforms
service delivery where the
role of the public is with
active participants in
design and delivery
Public engagement can be
a practical way to
familiarize public
expectations in a new
policy environment.
Indiv
idual
, C
om
munit
y, S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples
Engagement in
government services
should aim at
collaborative policy
making that joins up
communities through
partnerships between
citizens, community
organizations and
the multiple levels of
government. This
approach may be a
better way of doing
business because it
moves governments
and the community
toward a new view
in which they are
full partners in
governance.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
74
6 Tritter, &
Koivusalo,
(2013)
Multiple
Countries
FINLAND
Aim is to
answer the
question -
Does Patient
and Public
Involvement
(PPI) make a
difference?
Q
ual
itat
ive
Res
earc
h
Nat
ional
Authors posit the NHS
Health & Social Care Act
2012 legislation
undermines the principle
of PPI, public
accountability and takes
back the power for
prioritisation of health
services to unaccountable
medical elite. The
Clinical Commissioning
Groups (CCGs) have
statutory power to ‘do’
PPI but have no
requirement to involve the
local HealthWatch, has
limited experience and no
accountability to local
people. Authors reported
that the bill erodes public
ownership of the NHS –
PPI is weakened due to
emphasis on individual
patient choice. In
div
idual
Com
munit
y S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
Patients perspective
motto “there should
be no decision about
us, without us” and
question remains
whether this is
merely rhetoric or
will be made a
reality - and query -
how will we know?
PPI is a mechanism
for dialogue about
what the public
wants and needs to
promote well-being
and hold all involved
(e.g., politicians,
healthcare provider
organizations and
patients)
accountable.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
75
7 Tritter, J,
Q.,
McCallum,
Alison,
(2006). The
snakes and
ladders of
user
involvement
: Moving
beyond
Arnstein.
Health
Policy, 76,
156-168.
Multiple
Countries
Finland
Arnstein’s
model,
emphasizes on
power limits
effective
responses to
the challenge
of involving
users in
services and
undermines the
potential of the
user
involvement
process. Such
an emphasis on
power ignores
the existence
of different
relevant forms
of knowledge
and expertise.
Qual
itat
ive
Res
earc
h
Nat
ional
PPI is more likely to be
unsuccessful when there is
a mismatch of expectation
or method. User
involvement requires
dynamic structures and
processes legitimised by
both participants and non-
participants and mandates
more direct forms of user
involvement.
Understanding user
involvement as a part of a
larger system helps bridge
the divide between micro
level changes and system-
wide reforms. Policy
makers need to be aware
that an overemphasis on
ensuring statistical
representativeness in user
involvement blocks
attempts to begin to
involve users.
Indiv
idual
Com
munit
y S
yst
em Case
studies, the
implication,
results may
not be
generalizabl
e to other
countries.
For user
involvement to
improve, health
service providers
must acknowledge
the value of the
process and the
diversity of
knowledge and
experience of both
health professionals
and lay people.
Involvement
processes must be
enabling at 4 levels:
healthcare system,
organisation,
community, and
individual. Users
must have
mechanism and the
ability to shape the
methods used for
their involvement.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
76
8 Boivin,
Lehoux,
Burgers &
Grol, (2014)
Multiple
Countries
Canada
Process
evaluation
seeks to better
understand the
dynamic
relationships
between the
intervention
components
and public
members’
ability to
influence
collective
health care
improvement
decisions.
Mix
ed M
ethodolo
gy
Res
earc
h
Reg
ional
The literature remains
characterized by a
combination of practice
stories that are contextual
learning and light on
causal mechanisms, and
experimental studies
implemented. A number
of interacting active
ingredients structure and
foster the public’s
legitimacy, credibility,
and power. By paying
greater attention to them,
policymakers could
develop and implement
more effective public
involvement
interventions. Restricting
public involvement to 1 or
2 individuals without
appropriate support it is
unlikely to change health
care and policy decisions. In
div
idual
, C
om
munit
y, S
yst
em The
generalizability
of the
findings
could be
limited due
to the
diversity of
public
involvement
intervention
s and the
influence of
the socio -
political
contexts in
which they
are
implemente
d.
The authors suggest:
1 more consistent
definitions of PP
mechanisms; 2 link
empirical research
with theory and pre-
specified hypothesis;
3 use
multidisciplinary
perspectives and
mixed evaluation
methods; and 4
conduct research on
real-world
involvement
interventions.
Policymakers should
seek to apply broad,
clear and consistent
principles enabling
the development of
more effective
involvement
interventions.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
77
9 Legare,
Stacy &
Forest,
(2007)
Multiple
Countries
Canada
Discuss the
current state
and challenges
with
implementatio
n of patient
involvement at
three levels,
macro, meso
and micro
level, specific
with Shared
Decision
Making
(SDM).
Qual
itat
ive
Res
earc
h
Nat
ional
R
egio
nal
National dialogues are
costly due to the expenses
associated with
preparation,
communication,
facilitation, reporting, and
transportation costs.
Current initiatives through
medical and nursing
organizations to explicitly
identify and evaluate
competencies related to
SDM have the potential
for broader influence on
SDM implementation.
Health Quality Council of
Saskatchewan – pubic is
more than advisory role
and includes a
transformative role in the
health system – including
partnering with other
Agencies. In
div
idual
, C
om
munit
y, S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
Challenges in terms
of exclusion and
isolation need to be
addressed. Similarly
to implementation of
SDM in other
countries, it would
be useful to reflect
on a national
initiative regarding
the implementation
of SDM within the
Canadian context.
The future of public
engagement in
health governance
and policy might be
dependent on the
development of new
interactive
approaches, based on
low cost
technologies.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
78
10 Sheedy, A.,
(2008).
Canada
Contribute to
the closing of
the gap
between
governments
and citizens, to
allow public
servants
and politicians
to reconnect
with citizens’
needs,
priorities, and
values.
Gre
y L
iter
ature
Nat
ional
Engaging citizens in a
policy or program
development process from
the beginning can:
increase citizens’ sense of
responsibility and
understanding for
complex issues; be an
important mechanism to
clarify citizen’s values,
needs and preferences;
lead decision-makers to
make better decisions by
helping them to
understand the potential
social and ethical
implications of their
decisions; allow
politicians to share
ownership for a
controversial public
decision with citizens;
and, increase legitimacy
of public decisions. In
div
idual
, C
om
munit
y, S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples
What citizen
engagement requires
governments to do is
- share agenda-
setting and ensure
that policy proposals
are generated jointly
to enable citizen
views to be taken
into account in
reaching final
decisions.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
79
11 MacKinnon
, (2003)
Canada
The
Commission
on the Future
of Health Care
in Canada
wanted to learn
what
Canadians
thought about
re: sustaining
the health care
system in the
21st century
re: information
about citizens’
values and
their preferred
choices about
priorities.
Sec
ondar
y
Inte
rpro
vin
cial
/Nat
ional
Citizens: gain a greater
sense of ownership of the
health care system during
dialogue and go beyond
their roles as users or
consumers, to seeing
themselves as owners,
investors, and
stakeholders. Engagement
helps to clarify how
deeply held values are
evolving with changing
circumstances.
Engagement works when
policymakers are ready to
invest in learning and
listening, when they are
ready to open up a
discussion on the
conflicted choices and
trade-offs, and when they
place a high value on the
process of public learning. C
om
munit
y S
yst
em May not be
generalizabl
e to other
countries
Results indicate a
wide gap between
professionals who
have been reforming
healthcare system
efficiencies in
Canada and what
citizens are saying –
namely, their
experiences in the
day to day care has
not improved - nor
do people believe it
is more sustainable.
Citizens are prepared
to adopt new ways
of interacting with
service providers,
which policymakers
have usually
assumed would be
resisted.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
80
12 Canadian
Institutes of
Health
Research,
(2014)
Canada
The Strategy
for Patient-
orientation
Research
(SPOR).
Putting
Patients First
Patient
Engagement
Framework.
SPOR Patient
Engagement
Framework is
designed to
establish key
concepts,
principles and
areas for
patient
engagement to
be adopted by
all SPOR
partners.
Gre
y L
iter
ature
Nat
ional
, P
rovin
cial
The consultation sought input
from PPE experts on their
desired outcomes for patient
engagement included:
creating inclusive mechanisms
and processes; establishing
capacity for respectful
collaboration is amongst
patients, researchers and health
care providers; valuing the
experiential knowledge of
patients as the part of the
research process; and,
informing and co-directing
research via patients.
Co-c
reat
ing m
ult
iple
par
tner
s Some
limitations
of
coproductio
n - results
may not be
generalizabl
e
Successful patient
engagement
includes: 1 inclusive
mechanisms and
processes where
patient involvement
is included at all
levels; 2 multi-way
capacity building
ensures that the
capacities of
patients, researchers,
and health care
providers are
developed in order to
work effectively
together; 3 multi-
way communication
and collaboration; 4
experiential
knowledge is valued
as evidence; 5
patient-informed and
directed research
approaches engage
patients in
collaborative
methods; 6 a shared
sense of purpose.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
81
13 British
Columbia.
Office of
the Auditor
General.
(2008).
Canada
B.C.
To understand
the interest in
Canada — both
by the public
and their
governments -
for public
participation
(PP)
Understand
how
governments
strong in PP
practice were
approaching
this issue
Develop a
framework
intended to
assist the
public sector in
the design and
delivery of PP.
It also serves
as a
benchmark of
what good
practice
entails.
Gre
y L
iter
ature
Nat
ional
, P
rovin
cial
, In
tern
atio
nal
Governments in Canada are using PP to revitalize their relationships with other governments and with citizens. The Canadian public wants greater participation in government decision-making. Overall, the public are satisfied with their participation experiences, but disillusioned with the results. Successful PP is guided by well-defined principles, makes decisions more durable, and is becoming viewed as a mechanism of good governance. B.C. Government’s core values support the use of PP, but these values have not been translated into principles for conducting PP yet. The B.C. Government is conducting PP, but no formal government-wide guidance is available to ensure a reasonable process is followed and there is no process to ensure a consistent approach to PP across government.
Indiv
idual
, C
om
munit
y, S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples
As government
engages on a wide
variety of issues and
across the public
engagement
continuum,
flexibility is key to
ensuring that the PP
design and methods
fit the appropriate
circumstances.
Government needs
to have the ability
and knowledge to
determine where
PPE would be most
beneficial and
cost-effective.
Government entities
should champion PP
and not have a
central agency
conduct it for them.
Some provincial and
municipal
governments in
Canada have lodged
the responsibility for
PP to a
communications
group or central
agency that promote
consistency and best
practice, build
capacity across
government
agencies, and act as
a resource for
government entities.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
82
14 Capital
Health.
(2014)
Canada
Nova Scotia
Capital
Health
Outline Policy
Procedures for
Citizen
engagement
and person
centered care.
Capital Health
ensures its
decisions and
priorities
reflect the
needs of the
people it
serves by
engaging
patients and
citizens.
Gre
y L
iter
ature
Reg
ional
Pro
vin
cial
Transparent information
sharing is a foundational
to effective engagement
practice. All engagement
activities require reporting
to the public in a timely
manner to ensure
accountability.
Compliance with this
policy is tracked and
reported. All engagement
activity conforms to
recognized standards of
best practice by the
International Association
for Public Participation
(IAP2).
Indiv
idual
, C
om
munit
y, S
yst
em May not be
generalizabl
e to other
regions,
provinces,
countries
Effective
implementation of
policy includes: 1
establishing
expectations; 2
clearly describing
accountabilities re:
engagement; 3
establishing PPE
actions as a key
transformative
business process; 4
being publically
accountable; 5 being
responsive to
patients/ public; and,
6 achieving strategic
goals and
milestones.
15 Abelson, et
al., (2007).
Canada
To document
and interpret
the role of
multiple
contexts in
shaping the
design,
implementatio
n and
evaluation of
public
involvement
processes.
To assess the
performance of
a generic
public
participation
method with a
common set of
attributes.
Mix
ed M
ethod
Res
earc
h
Reg
ional
Results flag the critical
role played by decision
makers and the
organizations within
which they operate in
shaping PP
implementation processes.
Given the centrality of
their roles in these
processes, a more
comprehensive
understanding of their
expectations of and
apprehensions toward PP
is needed. Results
illustrate participants
expectations can change
throughout the
engagement process.
Com
munit
y ,
Sy
stem
May not be
generalizabl
e to other
health
polices in
different
countries
/states.
Need longer
timeframes for
studies to allow
more comprehensive
assessments of the
effects that
interventions may
have on
organizations and
the public. Focus is
required to identify
the most effective
formats for
presenting
information to
citizens, keep in
mind that not all
participants’
information needs or
expectations will
ever be met.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
83
16 Thurston, et
al., (2005).
Canada
Develop a
theoretical
framework for
understanding
Public
Participation
(PP) in the
context of
regionalized
health
governance. Mix
ed M
ethodolo
gy
Res
earc
h
Reg
ional
Themes identified:
PP technique(s)
employed; which
participants are involved
in a particular
initiative, how and why
participants became
involved, who they
represent; profiles and
credibility of an initiative;
history and prior identities
of initiatives; formal
mandates of initiatives;
the actual functions of the
initiative; monitoring
of the health care sector’s
performance; and, the
formal and informal rules
of engagement of various
facets of the initiative.
Policy-making is a
complex political process
that is influenced by a
multitude of factors both
internal to and external to
the health region.
Com
munit
y Generalizab
ility of the
findings
could be
limited
because
only 5 case
studies were
involved.
From a policy
perspective, the
organizational and
social context
including the nature
of the issue being
addressed will be
limited if PP is
defined as a PP
technique. PP needs
to be considered in
the complexity of the
policy environment
– and may need to
affect the political
space of varying
levels of intersecting
policy environments.
There remains a
need to examine how
citizen participation
is linked to
accountability for
decision making.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
84
17 Kovacs-
Burns,
Bellows,
Eigenseher,
Gallivan,
(2014)
Canada
Alberta
Alberta Health
Services
requested
scoping review
to inform the
contents of a
patient
engagement
resource kit for
patients,
providers
and leaders.
Qual
itat
ive
Res
earc
h
Pro
vin
cial
Patient engagement was
generally considered
beneficial to the health
care system in its policy
and planning activities.
Benefits: patient
engagement enabled the
health system to address
the right issues in an
appropriate way, design
programs, policy and
planning activities
specific to the needs of
both individuals and
special populations;
achieve better results; and
validate outcomes.
Limitations/Barriers
included: the lack of
political commitment at
all levels in the healthcare
system. Bureaucracy
barriers included
administrative procedures,
reporting and lack of
technical skills required.
Indiv
idual
Com
munit
y S
yst
em Language
and
confusing
terminology
specific to
patient
engagement
was a
challenge
The synthesis and
findings in the
literature include
fifteen similar terms
and definitions for
‘patient
engagement’, 17
various engagement
models, numerous
barriers and benefits,
and 34 toolkits for
patient
engagement and
evaluation
initiatives. Findings
also included
benefits and barriers
(in the findings
column).
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
85
18 Government
of
Newfoundla
nd and
Labrador.
(n.d.)
Canada
Newfoundla
ndand
Labrador
Provide useful
information for
departments to
implement
successful
public
engagement
processes and
activities. G
rey L
iter
ature
Pro
vin
cial
R
egio
nal
When the public is
engaged, government can
utilize its expertise to
make better quality
decisions in which
residents have a higher
level of confidence.
Quality engagement will
ultimately lead to better
policies and decisions,
reduced conflict,
enhanced civic
participation and a
strengthened democracy
overall.
Indiv
idual
C
om
munit
y S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples
Possible impacts of not
engaging the public
include: 1 setbacks and
increased costs due to
stakeholder lobbying; 2
lack of project and
decision buy-in from
stakeholders; and, 3 loss
of public credibility.
Many governments have
accepted that there is a
need to do a better job of
engaging the public in
policy and decision-
making. High quality
engagement processes
are required to be
successful. This requires
planning, adequately
resourcing, and
recognizing and utilizing
the knowledge possessed
by the public through
engagement.
19 Church,
Saunders,
Warke, et
al. (2002)
Canada
Provide
decision-
makers a
clearer idea of
challenges and
best practices
in citizen
participation in
healthcare.
Sec
ondar
y R
esea
rch
Nat
ional
Pro
vin
cial
A challenge in the policy
process is that it is
complex, uncertain and
non-linear. Government
policymakers managing
the complexity to achieve
political objectives -
occurs within short
timelines and is often the
priority.
C
om
munit
y
Sy
stem
Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
Enhancing citizen
participation in
health decision-
making involves
developing
appropriate
engagement
structures and
processes.
A commitment of
time, energy and
financial resources;
creating trust among
academics, public
health practitioners
and community
members is required
to be successful.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
86
20 Institute of
Public
Administrat
ion (IPAC),
MNP LLP,
Fasken
Martineau.
(2013).
Briefing
document
specific to
healthcare
governance
system in each
jurisdiction.
Information
briefing for
healthcare
leaders to
explore how
healthcare
governance
models work at
the provincial,
regional and
local levels
within our
national
context.
Gre
y L
iter
ature
Pro
vin
cial
Nova Scotia - BILL NO. 1
Health Authorities Act,
2014, involved public
engagement plans.
Alberta Health Services is
responsible for fostering
community engagement
via 12 Health Advisory
Councils and partners
with multiple non-profit
organizations. System-
wide quality performance
measures / indicators
measure include patient
engagement. Ontario,
Local Health Integration
Act, Local Health
Integration Networks
(LHINs) performance
agreements include 3 year
Integrated Health Service
Plans (IHSPs) involving
significant community
and stakeholder
engagement. Prince
Edward Island (PEI) -
Health PEI (a Crown
Corporation) is
accountable to the
Department of Health and
Wellness. Health PEI -
Committees of the Board
include: Quality and
Safety, Compliance and
Monitoring, and, Public
Engagement.
Syst
em Brief did
not include
Yukon and
the
Northwest
Territories
due to lack
of available
data. The
paper does
not address
federal
health
issues, nor
Aboriginal
health
issues.
May not be
generalizabl
e to other
countries or
states.
Healthcare system is
managed within an
environment of global
fiscal constraint. All
provincial governments
are facing severe fiscal
pressures. Jurisdictions
in Canada have adapted
and modified their
healthcare governance
systems to better manage
their system in the
context of these
pressures. There is
increasing recognition of
the role that systems-
level governance plays in
managing these
challenges. Provincial,
regional and local
models of care may all
have an effect and role in
ensuring quality of care,
equity, and access and in
managing cost pressures
and furthering
integration (including
patient and public
engagement).
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
87
21 Ansari, &
Andersson,
(2011).
UK
Examines
whether
economic
analysis poses
a threat or an
opportunity
for future
public
participation. Q
ual
itat
ive
Res
earc
h
Nat
ional
Patient and Public
Involvement (PPI) is
viewed as a democratic
right. Governments are
investing large amounts of
public resources (taxes)
into PPI. PPI in decisions,
services and policy has
increased substantially.
Voluntary, public and
private sectors have
assigned resources to PPI,
ranging from setting up
long-term structures (local
strategic partnerships) to
one off events (citizens’
juries).
Syst
em The
limitations
and
implications
of using
research
conducted
by
INVOLVE
2005
(primary
research
included
qualitative
interviews
with leading
thinkers
thus there
may be a
source of
bias in
interpretatio
n of
examples).
Need to improve the
evidence base on
which participation
decisions are made;
the lack of economic
information about
participation causes
barriers. Two
arguments included:
mainstream
economic theory is
not able to explain
participation and is
unsuitable for
assessing
participation; and,
economic
measurement is
necessary because
PPI constitutes
investments of
public (taxpayer)
resources.
22 Martin,
2009).
UK
Analyze the
justifications,
rational
differences,
tensions,
challenges and
consequences
of public
participation
(PP) practice
and policy.
Sec
ondar
y R
esea
rch
Reg
ional
, P
rovin
cial
, N
atio
nal
Contemporary policy
related to justification of
PP demands more
complex roles of involved
publics which call upon
various qualities required
for governing the interface
between state and society.
Experiential
representativeness of the
rationales tends towards a
knowledge based
contribution.
Syst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
Criteria (e.g.,
requirements set out
for volunteers) for
participation sought
from government
may tell us
something about
what policymakers
want from citizen
participation.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
88
23 Hogg,
(2007)
UK
Provide an
overview on:
the
effectiveness
of PPI; review
accountability,
independence,
consistency of
performance,
representation;
and how
arrangements
for the NHS fit
within the
wider agenda
of citizenship
and democratic
renewal.
Qual
itat
ive
Res
earc
h
Reg
ional
, P
rovin
cial
, N
atio
nal
Consumer voices may
help bridge the NHS and
local authorities to
improve the co-ordination
of services and planning
between the NHS and
local authorities through
members. Patients taking
part in decisions, as
insiders help to make
providers more responsive
to patients’ experiences.
The public involved
through independent local
advisory forums of
residents provides a
mechanism for
determining health
priorities and policies.
LINks may contribute to
local democracy by
integrating PPI into civil
renewal and active
citizenship and the new
localism. Since the 1990’s
health service policy
reforms have fostered
active citizenship,
overcoming social
exclusion and promoting
PPI in decision-making at
local levels.
Syst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of the
examples.
Difficulties in
recruiting volunteers
have occurred due to
multiple reasons
(e.g., duplication and
overlap, consultation
fatigue, and
disillusionment
within the voluntary
sector). PPI in
England is
undergoing a further
period of instability
and the risks of
getting it wrong
again are high –
threatening a loss of
public goodwill and
a waste of resources.
What was not
addressed was the
nature of
representation,
accountability and
governance. This
may have left NHS
open to criticisms of
being undemocratic,
unrepresentative and
inconsistent.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
89
24 Edgaman-
Levitan,
Bracy &
Howitt,
(2013).
UK
How can
involving
people in
healthcare be
used to achieve
change?
The report
introduces a
new Global
Health
Partnership
Framework to
clarify
opportunities
for innovation.
Sec
ondar
y R
esea
rch
Glo
bal
\ N
atio
nal
Engagement is the key to
innovation, promotes
effective stewardship and
utilization of limited
resources. Benefits and
barriers to engagement
and opportunities for
action are outlined. What
is needed in public policy
are structures for
supporting engagement,
such as a patient centered
measurement system,
media partnerships that
assist in effective public
communication, and
aligned incentives.
Indiv
idual
, C
om
munit
y, S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples
Recommendations
includes: directly
engaging the public
in policy-making,
using multiple
methods and
mechanisms;
examining and
aligning incentives
for the public,
healthcare
organizations and
governmental
agencies to promote
engagement of the
public.
25 Martin,
(2009)
England
UK
Public
Participation
(PP) analysis –
specific to
differences and
overlaps
between
rationales
about the
knowledge that
the public can
provide.
Examines
challenges
implementing
a vision for PP
into practice
(including
policy and
gaps in
practice).
Qual
itat
ive
Res
earc
h
Pro
vin
cial
, N
atio
nal
PP may improve
accountability of public
administration where
there is democratic
insufficiency. PP may
increase the legitimacy of
public institutions that
may contribute to the
democratic renewal of
Society through
challenging citizen
disengagement. Extensive
roles are provided to
individuals who have a
combination of
competencies and skills.
These competencies
provide them the ability to
translate concerns of a
particular public – into an
issue amenable to
interventions /discussion
with policymakers and
other public servants.
Indiv
idual
, C
om
munit
y, S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples
PP in policy helps to
fulfill the need for
those charged with
the delivery of
public services to
better understand the
needs and wishes of
the public they
serve.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
90
26 Mullen,
Hughes &
Vincent-
Jones,
(2011)
UK
Illuminate
evaluating the
democratic
potential of the
PPI framework
legislation in
healthcare
governance in
England. Q
ual
itat
ive
res
earc
h
Nat
ional
A deliberative approach to
PP may contribute to
increased confidence in
the legitimacy of
decisions. This approach
included: limited debate
within small governing
groups (risk is that the
collective group may not
have relevant ideas and
challenges) or, allow a
broader range of
participants (to provide
great opportunity for
diversity of ideas,
challenges).
Syst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
The risk with a
broader range of
participants is an
overly complicated
process.
Deliberative
involvement relies
on the willingness of
key leaders to
respond
appropriately to
ideas and challenges
in their policy
decisions and
implementation.
27 Scottish
Government
(2007)
NHS
Scotland
Action Plan for
Change
captures a
vision for the
NHS based on
a shift where
people are
viewed as
“patients” to a
seeing the
Scottish people
and the staff of
the NHS as
partners, or co-
owners, in the
NHS.
Gre
y L
iter
ature
Nat
ional
Three main components
of Better Health, Better
Care Action Plan. The
Plan sets out a programme
and targets action to
accelerate progress. This
new philosophy involves
partners having real
involvement and a voice
that is heard. Actions
include: strengthen public
ownership by: improving
rights to participate;
embedding patient
experience in performance
management;
strengthening the
approach to service
improvement - the feature
of Scotland’s NHS.
Syst
em The
generalizability of the
findings
could be
limited
because of
the
diversity of
influence of
the
socio-
political
contexts.
Intent is to shift
NHS ownership and
accountability to
Scottish people and
with the staff of the
NHS. This positions
Scotland citizens not
just as consumers -
with only rights - but
as owners - with
both rights and
responsibilities. A
mutual NHS requires
shifts in control,
status and
participation that
will take time.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
91
28 Directorate
Office of
the Chief
Medical
Officer,
Northern
Ireland,
(2007)
Assist Health
and Social
Care (HSC)
organisations
to
improve the
quality and
effectiveness
of user and
public
involvement as
an integral part
of effective
governance
and to support
the
development
of a more
patient and
user-centred
HSC.
Gre
y L
iter
ature
Nat
ional
R
egio
nal
Seeks to clarify and
standardise
implementation practice
policy requirements and
statutory responsibilities
re: user and public
involvement. Guiding
document includes
principles of good practice
and provides a framework
of self-evaluation to assist
HSC organisations to
integrate PPI into the
organisation’s
governance. Statutory
requirements to consult
and involve people are
embedded in legislation.
The purpose of this
policy: PPI in every HSC
organisation; promote
greater uniformity and
consistency in PPI activity
across HSC organisations;
improve the quality of the
individual’s experience of
HSC services by
involving people in plans
and decisions about their
own care or treatment and
learning from
their experiences to
improve service delivery;
ensure HSC organisations
take the public’s views
into account in planning,
commissioning, delivering
and evaluating services;
and, support the
integration of PPI into
individual and
organisational clinical and
social care governance
arrangements within.
Indiv
idual
, C
om
munit
y, S
yst
em Socio-
political
contexts
may serve
as a source
of bias in
interpretatio
n of
examples
Successful PPI
requires genuine
commitment from
senior managers and
all staff. This
requires developing
a culture of
openness, respect,
listening and a
willingness to
change within
workplaces. Genuine
PPI takes time and
commitment to
achieve. Developing
the right culture is
one of the biggest
challenges in
ensuring PPI is both
meaningful and
effective. Effective
PPI can change
peoples’ experience
of services and the
quality and safety of
care. PPI can also
increase service
responsiveness and
accountability to
local communities
and the wider
population. Staff
morale and
satisfaction can also
improve when staffs’
realize they are
providing a
responsive service
that is valued by
individuals and
appreciated by the
wider public.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
92
29 Warbuton,
Wilson, &
Rainbow,
(2012)
Public
engagement is
viewed as a
central element
in public
policy
processes. This
evaluation
provides case
studies to
eliminate key
learning’s.
Gre
y L
iter
ature
Nat
ional
Evaluation is relatively
new in the context of
public engagement.
However, it is
increasingly vital as
engagement becomes
more widespread.
Therefore the need to
assess the effectiveness of
different approaches, to
increase accountability
and to learn from
experience becomes
paramount.
Indiv
idual
, C
om
munit
y, S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
Public engagement
evaluation that is
specific to policy
should help answer
three simple
questions: 1 Has the
initiative
succeeded?; 2 Has
the process worked?
and, 3 What impact
has the process had?
30 Public and
Patient
Experience
and
Engagement
Team,
(2011)
Policy
Estimates
Reference
15822 –
Describes key
issues for
LINks, their
organisations
and local
authorities
during
transition prior
to
HealthWatch
being
established.
Qual
itat
ive
Res
earc
h
Reg
ional
, N
atio
nal
HealthWatch
(independent consumer
champion for the public
locally and nationally)
Transition Plan focuses on
building upon successes
and engaging people in
decision making who are
affected by decision about
local services, supporting
individual and community
engagement, and ensuring
consumer voice has
influence locally and
nationally.
Indiv
idual
, C
om
munit
y, S
trat
egic
Socio-
political
contexts
may serve
as a source
of bias in
interpretatio
n of policy
plan.
Local HealthWatch
focuses on transition
from LINks
introduced in 2008
with PPI at strategic
levels to one
designated to
planning of local
health systems,
access and make
choices about care
and an advocacy
complaint
mechanism.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
93
31 House of
Commons,
Health
Committee
(2007)
Patient and
Public
Involvement
(PPI) in the
NHS – Third
Report of
Session 2006-
07
Volume 1
Gre
y L
iter
ature
Nat
ional
The conflation of multiple
terms for PPI and the
confusion about the
purpose of involvement
has led to muddled
initiatives and uncertainty
about what should be
done to achieve effective
PPI. However, PPI has the
potential to play a key role
in both NHS and Social
Care services by bringing
about service
improvement and
improving public
confidence. Patients’
views can help refocus
decision makers on issues
that are critical to a
patient’s experience of
healthcare but which also
may be overlooked by
conventional management
approaches. Involving
patients can also provide a
further layer of quality
assurance for things that
should clearly form part
of mainstream clinical and
hospital management but
may benefit from ongoing
reinforcement.
Syst
em Socio-
political
contexts
may serve
as a source
of bias in
interpretatio
n of this
Bill.
Public trust is earned
and easily broken.
Recommendation:
Where patient and
public viewpoints
can make a
meaningful
contribution to
debate, consultation
on national policy
may be valuable
both in terms of
enhancing
accountability and
improving policy
making, even if final
decisions must
ultimately rest with
elected
representatives.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
94
32 House of
Commons
Public
Administrat
ion Select
Committee
(2013)
Public
engagement in
policy-making
Bill Ordered
by the House
of Commons
UK
Gre
y L
iter
ature
Nat
ional
Engaging the public and
experts in debates about
policy and in the policy-
making process itself, and
establishing a new
relationship with the
citizen who becomes a
valued partner to identify
problems will lead to new
thinking and proposed
solutions. Further, citizen
engagement in policy
making helps institutions
to be aware of public
concerns and expectations
and supports real-world
problem solving.
This is a departure from
traditional approaches
which have occurred after
the Government has
already determined a
course of action.
There is considerable
potential for open and
contested policy-making
to deliver genuine public
engagement and there is
also a risk of public
disappointment and
scepticism about the
impact of their
participation, and the
opinion that Government
listens only to the media
and lobbyists.
Syst
em Socio-
political
contexts
may serve
as a source
of bias in
interpretatio
n of this
Bill.
Policy-making
processes debates
need to take place
outside Government
and involve public
and community.
Ultimate
responsibility and
accountability for
leadership must
remain with
Ministers and senior
civil servants.
Government
leadership is
important for
effective
strategic thinking -
choosing between
different arguments,
reconciling
conflicting opinions
and arbitrating
between different
groups and interests.
Thus there can be no abdication of that leadership. Government leaders
must commit
sufficient time and
resources for public
engagement.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
95
33 Queensland
Government
, (2012)
Health
Consumers
Queensland
(HCQ)
Framework
provides a
guide for
supporting
the
development
of effective
consumer and
community
engagement
strategies.
Processes for
state, national
and
international
approaches to
consumer and
community
engagement
reflect there is
no ‘one size
fits all’
approach.
Gre
y L
iter
ature
Reg
ional
, S
tate
N
atio
nal
The system level of
engagement focuses on
how consumers and
communities influence,
engage and provide input
on health policy, reform
and legislation at the
system level across local,
state and Commonwealth
jurisdictions. The Local
Health and Hospital
Networks (LHHNs) have
a consumer engagement
policy specifically,
research and ethics, and
ensures that the consumer
voice is represented on
committees that undertake
debate and discussion
regarding ethical and
research matters. The
health service
organisations have
consumer and community
engagement mechanisms
in place to influence and
input into health policy
and initiatives from a
consumer and community
perspective.
Indiv
idual
, C
om
munit
y, S
trat
egic
May not be
generalizabl
e to other
countries/
states
The HCQ
Framework has
application across
public and private
health service
organisations
delivering health
promotion,
prevention, primary,
acute, sub-acute and
community health
services.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
96
34 Cavaye,
(2004)
Australia
Outline and
illuminate
insights from
community
engagement
experiences,
suggest new
approaches,
and describe
actions that
would better
support citizen
participation.
Sec
ondar
y R
esea
rch
Nat
ional
While government
affects communities and
vice versa, there is a limit
to the engagement and
influence
government has with
communities. Risks:
government embracing
community engagement
with traditional
assumptions and
principles of service
delivery and technical
assistance. Genuine
partnership requires
different assumptions,
values and principles.
Without new thinking,
government agencies can
subtly develop mindsets
that support the
techniques and structures
of community
engagement without the
cultural change. Listening
better incorporates a
dialogue where each is
seen to add value to the
other.
Syst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
Government at all
levels
in Australia are
adopting new
processes of
community
engagement by
reconnecting
government with
fostering citizenship
and engaging
communities. The
author argues that a
more flexible system
of governance is
required to allow
government agencies
to better manage the
dilemmas and trade-
offs inherent in true
community
engagement.
Moreover, this
appeals for changes
in policy, structures
and practice as well
as demands changes
in the assumptions,
values and culture of
public
administration.
35 McCaffery,
et al.,
(2011)
Australia
Authors
describe the
current
position of
shared
decision
making (SDM)
within the
context of the
Australian
healthcare
system.
Qual
itat
ive
Res
earc
h
Nat
ional
The Consumer’s Health
Forum of Australia (an
independent member-
based non-government
organisation which is
funded by the Australian
Government) nominates
and supports consumer
representation with
government, industry and
professional
organisations.
Com
munit
y, S
yst
em Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
System related
barriers included:
time constraints –
cited as being a
critical issue with
nursing and general
practice; division of
labour and power
issues; geographic
isolation, no overall
policy framework
for SDM.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
97
36 Department
of Human
Services,
Victoria
Government
(2006)
Australia
“Doing it with
us not for us”
participation
policy
provides
guidance on
how all
stakeholders,
consumer,
carer, and
community
participation
across the
health service
system can all
work together.
Gre
y L
iter
ature
Nat
ional
Core characteristics of
patient and public
engagement specific to
using knowledge as a
resource in co-producing
value in health care
system policy. There are
seven guiding objectives
of the policy that states
how participation can be a
key to improving health
policy, care and treatment,
and the wellbeing of all
Victorians. Three key
objectives of partnerships
include: making joint
decisions, agree on
processes and collectively
own the outcomes.
Indiv
idual
, C
om
munit
y, S
trat
egic
Socio-
political
contexts
may serve
as a source
of bias in
interpretatio
n of this
policy
document.
Principals underpin
how the policy
should be
implemented into
action. Partners
agree to work
together and decide
on policy directions,
research, plans,
treatment or care.
The priority actions
provide specific
direction on what
needs to be achieved
to meet the
objectives. Broad
policies and
guidelines drive the
participation policy
and support the three
key reasons why we
value participation:
improvement,
democratic right and
accountability.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
98
37 Carmen, et
al., (2013)
United
States
Propose a
multi-
dimensional
Framework for
patient and
family
engagement
(e.g.,
consultation to
partnerships to
shared
leadership)
that includes
decision-
making
authority.
Qual
itat
ive
Res
earc
h
Reg
ional
, P
rovin
cial
, N
atio
nal
Authors posit that policy
makers as well as
healthcare professionals at
all levels – clinicians,
administrators, member of
professional societies, and
researchers play critical
roles in partnering with
patients and families and
supporting them in new
roles.
Indiv
idual
, C
om
munit
y, S
trat
egic
Self-
reported
factors may
serve as a
source of
bias in
interpretatio
n of
examples.
Emerging evidence
links patient
engagement to
improved outcomes
warrants attention.
A process involving
patients and multiple
stakeholders may
help prioritize gaps
and make
recommendations
throughout the
measure
development. Efforts
need to be made to i)
raise patients’
awareness about the
benefits of
engagement; ii)
encourage and
support patients’
increasing
responsibility and
leadership.
Healthcare
organizations and
policy makers need
to embrace new
norms and make
changes in their
culture, processes,
and structure.
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
99
Appendix F
Mind Map: Interconnections – Patient and Public Engagement (PPE) Policy
Government Role in PPE Policy Provide Government Leadership
Ensure there are Formal PPE Mechanisms Develop Clear Accountabilities &
Responsibilities
patients, communities, providers,
organizations, educators,
researchers, policymakers,
health administrators
Reasons healthcare policy-makers engage patients/public
improve collaboration
knowledge sharing
accountability
improve health system
decrease fragmentation
ensure equity
patient centered care
effective health system
more diverse ideas, perspectives, suggestions
policies more accessible/responsive to citizens
better informed decisions
limited resources available
inform healthcare systems policy
social capital
governance accountability
citizens’ rights
democratic legitimacy
Mine the Gaps…Roadblocks...Barriers
EVIDENCE, EVALUATION, RESEARCH
Commitment & Time, Culture Shift,
Uncertainties/Complexities, Competencies, Global Fiscal
Restraint, Inquire, Listen & Seek to Understand, Social
Inclusion, Interactivity Between Internal/External Stakeholders
Patient Public
Engagement Policy
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
100
Appendix G
Data display of the Patient and Public Engagement (PPE) influencing factors, levels of engagement and policy
# Multiple Stakeholders -
Influencing Factors for
PPE
Why healthcare policy-makers are and should engage in PPE Levels of
Engagement
Policy Levels
Pat
ient
/ P
ubli
c
Pro
vid
er(s
) /
Org
aniz
atio
ns
Aca
dem
ics
/ re
sear
cher
s /
univ
ersi
ty
Poli
cym
aker
s /
Adm
inis
trat
ors
Mec
han
ism
for
ongoin
g P
PE
Impro
ve
coll
abora
tion
know
ledge
shar
ing
Acc
ounta
bil
ity
Red
uce
hea
lth d
eliv
ery
frag
men
tati
on /
effe
ctiv
e h
ealt
h
syst
em
Ensu
re e
quit
y
Pat
ient
cente
red c
are
More
div
erse
id
eas,
per
spec
tives
, su
gg
esti
ons
Poli
cies
more
acc
essi
ble
and
resp
onsi
ve
to c
itiz
ens
Bet
ter
info
rmed
dec
isio
ns
Lim
ited
res
ourc
es a
vai
lable
Info
rm h
ealt
hca
re s
yst
ems
poli
cy
Soci
al C
apit
al
Impro
ved
gover
nan
ce,
acco
unta
bil
ity
Cit
izen
s’ r
ights
Dem
ocr
atic
Leg
itim
acy
Com
munit
y/O
rgan
izat
ion
(e.g
., o
rgan
izat
ional
des
ign,
gover
nan
ce)
Syst
em P
artn
er -
lea
der
ship
, co
-
des
ign,
shar
ed d
ecis
ion m
akin
g.
Poli
cy a
t th
e R
egio
nal
Lev
el
Leg
isla
tio
n, R
egula
tion, P
oli
cy
at t
he
Pro
vin
cial
/ c
ounty
/ le
vel
Leg
isla
tion R
egula
tion, P
oli
cy
at t
he
Nat
ional
, F
eder
al l
evel
1 Meads, Griffiths, & Goode.
(2007)
X X X X X X X X X X X X X X X X X X X X X X X X
2 Bovaird, (2007) X X X X X X X X X X X X X X X X X X X X X X
3 Conklin, Morris, & Nolte,
(2012)
X X X X X X X X X X X X X X X X X X X X X X
4 Oxman, et al. (2009) X X X X X X X X X X X X X X X X X X X X X X
5 Lenihan, (2012) X X X X X X X X X X X X X X X X X X X X X X
6 Tritter & Koivusalo (2013) X X X X X X X X X X X X
7 Tritter, & McCallum, (2006). X X X X X X X X X X X X X X X X X X X X
8 Boivin, et al., (2014) X X X X X X X X X X X X X X X X X X X X X
9 Legare, Stacy, & Forest,
(2007)
X X X X X X X
X X X X X X X X X X X
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
101
# Article Multiple Stakeholders -
Influencing Factors for
PPE
Why healthcare policy-makers are and should engage in PPE Levels of
Engagement
Policy Levels
Pat
ient
/ P
ubli
c
Pro
vid
er(s
) /
Org
aniz
atio
ns
Aca
dem
ics
/ re
sear
cher
s /
univ
ersi
ty
Poli
cym
aker
s /
Adm
inis
trat
ors
Mec
han
ism
for
ongoin
g P
PE
Impro
ve
coll
abora
tion
know
ledge
shar
ing
Acc
ounta
bil
ity
Red
uce
hea
lth d
eliv
ery
frag
men
tati
on /
effe
ctiv
e h
ealt
h
syst
em
Ensu
re e
quit
y
Pat
ient
cente
red c
are
More
div
erse
id
eas,
per
spec
tives
, su
gg
esti
ons
Poli
cies
more
acc
essi
ble
and
resp
onsi
ve
to c
itiz
ens
Bet
ter
info
rmed
dec
isio
ns
Lim
ited
res
ourc
es a
vai
lable
Info
rm h
ealt
hca
re s
yst
ems
poli
cy
Soci
al C
apit
al
Impro
ved
gover
nan
ce,
acco
unta
bil
ity
Cit
izen
s’ r
ights
Dem
ocr
atic
Leg
itim
acy
Com
munit
y/O
rgan
izat
ion
(e.g
., o
rgan
izat
ional
des
ign,
gover
nan
ce)
Syst
em P
artn
er -
lea
der
ship
, co
-
des
ign,
shar
ed d
ecis
ion m
akin
g.
Poli
cy a
t th
e R
egio
nal
Lev
el
Leg
isla
tion, R
egula
tion , P
oli
cy
at t
he
Pro
vin
cial
/ c
ounty
/ le
vel
Leg
isla
tion R
egula
tion , P
oli
cy
at t
he
Nat
ional
, F
eder
al l
evel
10 Sheedy, (2008) X X X X X X X X X X X X X X X X X X X X X 11 MacKinnon, et al. (2003) X X X X X X X X X X X X X X X X X X X X X 12 Canadian Institutes of Health
Research (2014)
X X X X X X X X X X X X X X X X X X
13 British Columbia. Office of
the Auditor General (2008).
X X X X X X X X X X X X X X X X X X X X X
14 Capital Health. Policy and
Procedure (2014).
X X X X X X X X X X X X X X X X X X X X X X
15 Abelson et al (2007) X X X X X X X X X X X X X X X X X 16 Thurston, et al (2005) X X X X X X X X X X X X X X 17 Kovacs-Burns, et al (2014) X X X X X X X X X X X X X X X X X X X X X X 18 Government of
Newfoundland & Labrador,
(n.d.)
X X X X X X X X X X X X X X X X
19 Church, et al., (2002)
X X X X X X X X X X X X X X X X X X
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
102
# Article Multiple Stakeholders -
Influencing Factors for PPE
Why healthcare policy-makers are and should engage in PPE Levels of
Engagement
Policy Levels
Pat
ient
/ P
ubli
c
Pro
vid
er(s
) /
Org
aniz
atio
ns
Aca
dem
ics
/ re
sear
cher
s /
univ
ersi
ty
Poli
cym
aker
s /
Adm
inis
trat
ors
Mec
han
ism
for
ongoin
g P
PE
Impro
ve
coll
abora
tion
know
ledge
shar
ing
Acc
ounta
bil
ity
Red
uce
hea
lth d
eliv
ery
frag
men
tati
on /
effe
ctiv
e h
ealt
h
syst
em
Ensu
re e
quit
y
Pat
ient
cente
red c
are
More
div
erse
id
eas,
per
spec
tives
, su
gg
esti
ons
Poli
cies
more
acc
essi
ble
and
resp
onsi
ve
to c
itiz
ens
Bet
ter
info
rmed
dec
isio
ns
Lim
ited
res
ourc
es a
vai
lable
Info
rm h
ealt
hca
re s
yst
ems
poli
cy
Soci
al C
apit
al
Impro
ved
gover
nan
ce,
acco
unta
bil
ity
Cit
izen
s’ r
ights
Dem
ocr
atic
Leg
itim
acy
Com
munit
y/O
rgan
izat
ion
(e.g
., o
rgan
izat
ional
des
ign,
gover
nan
ce)
Syst
em P
artn
er -
lea
der
ship
, co
-
des
ign,
shar
ed d
ecis
ion m
akin
g.
Poli
cy a
t th
e R
egio
nal
Lev
el
Leg
isla
tion, R
egula
tion , P
oli
cy
at t
he
Pro
vin
cial
/ c
ounty
/ le
vel
Leg
isla
tion R
egula
tion , P
oli
cy
at t
he
Nat
ional
, F
eder
al l
evel
20 Institute of Public
Administration of Canada, et
al., (2013)
X X X X X X X X X X X X X X X X X X X X X
21 Ansari & Andersson, (2011) X X X X X X X X X X X X X X X X X X X X X 22 Martin, (2009) X X X X X X X X X X X X X X X X X X X X 23 Hogg, (2007) X X X X X X X X X X X X X X X X X X X X 24 Edgaman-Levitan, Brady,
Howitt, (2013)
X X X X X X X X X X X X X X X X X X X X X X X X
25 Martin, GP (2008) X X X X X X X X X X X X X X X X X X X
26 Mullen, et al., (2011) X X X X X X X X X X X X X X X X X X 27 Scottish Government (2007) X X X X X X X X X X X X X X X X X 27 28 Directorate. Office of the
Chief Medical Officer (2007)
X X X X X X X X X X X X X X X X X X X X X 28
29 Warburton, et al., (2011) X X X X X X X X X X X X X X X X X X X X X X X X
30 Public and Patient Experience
Engagement Team, (2011)
X X X X X X X X X X X X X X X X X X X
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
103
# Article Multiple Stakeholders -
Influencing Factors for PPE
Why healthcare policy-makers are and should engage in PPE Levels of
Engagement
Policy Levels
Pat
ient
/ P
ubli
c
Pro
vid
er(s
) /
Org
aniz
atio
ns
Aca
dem
ics
/ re
sear
cher
s /
univ
ersi
ty
Poli
cym
aker
s /
Adm
inis
trat
ors
Mec
han
ism
for
ongoin
g P
PE
Impro
ve
coll
abora
tion know
ledge
shar
ing
A
ccounta
bil
ity
Red
uce
hea
lth d
eliv
ery
frag
men
tati
on /
effe
ctiv
e h
ealt
h
syst
em
Ensu
re e
quit
y
Pat
ient
cente
red c
are
More
div
erse
id
eas,
per
spec
tives
,
sugges
tions
Poli
cies
more
acc
essi
ble
and
resp
onsi
ve
to c
itiz
ens
Bet
ter
info
rmed
dec
isio
ns
Lim
ited
res
ourc
es a
vai
lable
Info
rm h
ealt
hca
re s
yst
ems
po
licy
Soci
al C
apit
al
Impro
ved
gover
nan
ce,
acco
unta
bil
ity
Cit
izen
s’ r
ights
Dem
ocr
atic
Leg
itim
acy
Com
munit
y/
Org
aniz
atio
n
gover
nan
ce)
Syst
em P
artn
er -
lea
der
ship
, co
-
des
ign,
shar
ed d
ecis
ion m
akin
g.
Poli
cy a
t th
e R
egio
nal
Lev
el
Leg
isla
tion, R
egula
tion , P
oli
cy a
t
the
Pro
vin
cial
/ c
ounty
/ le
vel
Leg
isla
tion R
egula
tion , P
oli
cy a
t
the
Nat
ional
, F
eder
al l
evel
31 The House of Commons,
Health Committee, (2007)
X X X X X X X X X X X X X X X X X X X
32 The Public Administration
Select Committee, (2013)
X X X X X X X X X X X X X X X X X X X X X X X X
33 Queensland Government,
(2012)
X X X X X X X X X X X X X X X X X X X X
34 Cavaye, (2004)
X X X X X X X X X X X X X X X X X X X
35 McCaffery, et al., (2011) X X X X X X X X X X X X X X X X X 36 State of Victoria, Department
of Human Services, (2006)
X X X X X X X X X X X X X X X X X X X X X X
37 Carmen, et al., (2013)
X X X X X X X X X X X X X X X X X X X X X
Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY
104
Appendix H
Data Comparison Influencing Factors of PPE Policy / Country
Influencing Factors of PPE Policy Number of Sources/Country with PPE Influencing
Factors
PPE Influencing Factors - Multi-pronged
engagement with:
Multiple
Countries
UK CA AUS USA Total
1 a. Patients/public 7 12 13 4 1 37
2 b. Providers/organizations 6 10 12 2 1 31
3 c. Medical educators /academic 2 3 8 0 1 14
4 d. Researchers/medical science 4 9 7 1 1 22
5 e. Policymakers, health leaders, administrators 6 11 13 3 1 34
6 Mechanism/group for ongoing PPE 7 12 13 4 1 37
Elements why policy-makers engage patients and the
public
1 a. Improve collaboration, ,knowledge sharing 6 11 13 3 1 34
2 b. Accountability 7 10 12 2 1 32
3 c. Reduce health delivery fragmentation /
effective health system
7 1 5 3 1 17
4 d. Ensure equity 5 8 7 1 1 22
5 e. Patient centered care services 3 6 5 3 1 18
6 f. More diverse ideas / perspectives /
suggestions
7 11 12 3 1 34
7 g. Policies more accessible and/or responsive to
citizens
7 12 13 4 1 36
8 h. Better informed decisions / communication 6 11 13 4 1 35
9 i. Limited resources available 3 10 11 3 1 28
10 j. Inform healthcare system policy 7 10 12 4 1 34
11 k. Social capital 3 8 3 2 0 16
12 l. Governance/accountability 6 12 12 3 1 34
13 m. Citizens rights 1 9 8 3 0 21
14 n. Democratic Legitimacy 5 11 6 2 0 25
Levels of Engagement
Community/organization al 6 12 13 4 1 36
System Partner (e.g., leadership, shared
decision making, co-design)
7 12 13 4 1 37
Levels of policy
Regional/Community 7 11 13 4 1 36
Provincial/State 6 9 11 4 1 31
National/Federal 7 11 7 4 1 30
Total number of sources 7 12 13 4 1 37
c. & d. were originally coded as separate factors – and should be thought of as one category