Tamara L. McCarron, BSc, MBA, PhD CandidateKaren Moffat, Patient Co-investigatorGloria Wilkinson, Patient Co-investigatorSandra Zelinksky, Patient Co-investigator
Supervisors: Drs. Tom Noseworthy & Nancy Marlett
How are health systems investing in patients? A co-designed scoping review.
Conflict of interest
None to declare
This work is supported by Alberta Health Services via a studentship
Background
Patient involvement remains a critical healthcare priority
Understanding “how” not well understood
Crossroads
Patient-centered care
— How are health systems deliberately “investing” in patients?
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A few important clarifications
What do we mean by investment?
What do we mean by co-design?— Co-design is defined as a process that occurs when a balanced
inclusion of individuals impacted by a decision, trained and not trained, come together to provide input in all aspects of the project from: agenda setting, problem understanding, concept development, prototyping and dissemination1
1 Coulter, 2011 ,Boyd, 2012, The King’s Fund 2013
Patient Co-investigators
How co-investigators were selected?
How were co-investigators involved?
Methodology
Why a scoping review?— Type of knowledge synthesis that
maps out key concepts, types of evidence and gaps related to a defined area by systematically searching, selecting and synthesizing existing knowledge [1]
Methodological framework [2,3]
— Recognized methodology
Patient co-investigator, Gloria, pulling full-text studies from the library databases
1 Colquhoun et al., 2014 2Arksey & O’Malley, 2005; 3 Levac et al., 2010
Results
12,170 studies
— 9,438 title and abstracts
458 full text
o 15 included studies
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Study Characteristics
Most studies were published after 2012
Primarily published in the United Kingdom
4 themes
Assessment1
CUMMING SCHOOL OF MEDICINE1 Pluye et al., 2011
Patient co-investigators working together on themes.
Involving Patients…Challenges
Researcher perspective
Patient perspective
Patient co-investigator, Karen, working on full-text review in the library.
“I was in over my head but I was convinced that this project was going to change the way patients are involved in their own health care.” - Karen
Involving Patients…Benefits
Benefits
“I am most proud of the growth in my confidence.” – Karen
“To be trusted to be asked to be a co-designer and to discover that I can still learn.” – Gloria
Notes taken by patient co-investigator during full text review.
Things to consider
Involve early
Build trust
Role description
Training
Journal
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Discussion
Studies scattered and narrowly focused
Focus remains on self-management
Gaps
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Conclusion
Studies are largely absent
Co-design was effective
This review
Evidence base is still emerging
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Acknowledgements
Alberta Health Services
Drs. Tom Noseworthy and Nancy Marlett
CADTH
Thank you
