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THE VOICE OF THEPATIENT AND THE
FAMILY ALONG THE
CONTINUUM OF
PATIENT-CENTERED
CAREGillian Cappiello, Planetree
KPJ HEALTHCARE CONFERENCE &
EXHIBITION 2013
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How are we doing listening to patients?
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Top Three Patient Concerns
Top Three Patient Concerns:
1. Dismissal / trivialization of
the patient voice
2. Absence of caring attitudesfrom providers
3. Lack of continuity in care
Based on 6,000+ focus groups with > 50,000 patients,
family members and professional caregivers facilitated by
Planetree over the past decade.
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I felt like I was
interrupting them
when I asked a
question.
#1 Dismissal / trivialization of the patient voice
http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=bvgmv6se1mQ0PM&tbnid=ulHxDVVbOYMmhM:&ved=0CAUQjRw&url=http://www.mnn.com/health/fitness-well-being/stories/healthy-but-lonely-people-head-to-hospital-during-holidays&ei=jpoQUemDHqnJ0QGLnoHoBg&bvm=bv.41867550,d.dmQ&psig=AFQjCNEEaSVZxpfmSQkkI9tidxEHm-n6Cw&ust=1360129025186500http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=bvgmv6se1mQ0PM&tbnid=ulHxDVVbOYMmhM:&ved=0CAUQjRw&url=http://www.mnn.com/health/fitness-well-being/stories/healthy-but-lonely-people-head-to-hospital-during-holidays&ei=jpoQUemDHqnJ0QGLnoHoBg&bvm=bv.41867550,d.dmQ&psig=AFQjCNEEaSVZxpfmSQkkI9tidxEHm-n6Cw&ust=1360129025186500http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=bvgmv6se1mQ0PM&tbnid=ulHxDVVbOYMmhM:&ved=0CAUQjRw&url=http://www.mnn.com/health/fitness-well-being/stories/healthy-but-lonely-people-head-to-hospital-during-holidays&ei=jpoQUemDHqnJ0QGLnoHoBg&bvm=bv.41867550,d.dmQ&psig=AFQjCNEEaSVZxpfmSQkkI9tidxEHm-n6Cw&ust=1360129025186500http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=bvgmv6se1mQ0PM&tbnid=ulHxDVVbOYMmhM:&ved=0CAUQjRw&url=http://www.mnn.com/health/fitness-well-being/stories/healthy-but-lonely-people-head-to-hospital-during-holidays&ei=jpoQUemDHqnJ0QGLnoHoBg&bvm=bv.41867550,d.dmQ&psig=AFQjCNEEaSVZxpfmSQkkI9tidxEHm-n6Cw&ust=1360129025186500http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=bvgmv6se1mQ0PM&tbnid=ulHxDVVbOYMmhM:&ved=0CAUQjRw&url=http://www.mnn.com/health/fitness-well-being/stories/healthy-but-lonely-people-head-to-hospital-during-holidays&ei=jpoQUemDHqnJ0QGLnoHoBg&bvm=bv.41867550,d.dmQ&psig=AFQjCNEEaSVZxpfmSQkkI9tidxEHm-n6Cw&ust=1360129025186500http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=bvgmv6se1mQ0PM&tbnid=ulHxDVVbOYMmhM:&ved=0CAUQjRw&url=http://www.mnn.com/health/fitness-well-being/stories/healthy-but-lonely-people-head-to-hospital-during-holidays&ei=jpoQUemDHqnJ0QGLnoHoBg&bvm=bv.41867550,d.dmQ&psig=AFQjCNEEaSVZxpfmSQkkI9tidxEHm-n6Cw&ust=13601290251865008/13/2019 2 Gillian Cappiello - Voice of Patient
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#1 Dismissal / trivialization of the patient voice
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Physicians typically spend < 1 minute of a typical visit discussingnew prescriptions.1
Physicians do not ask patients if they have any questions in more
than 50% of outpatient visits.2
The average time a health care professional spends educating a
patient on conditions and treatments critical for the patients care
is 11 minutes.3
During that time, patients ask an average of only two questions.Patients are afraid to ask their doctor questions for fear of
appearing to challenge them.3
1Patient Education and Counseling. 2009. 2Circulation. 2008.3 Health Affairs. 2012
The Engagement Dilemma
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Invite Patients in to be a Part of the Discussion
We must invite patients in to be a part of the discussionof what it means to achieve patient-centered excellence,
and to be a part of developing the solutions for achieving
that aim. (Planetree) Patients and families are
essential to effectingtransformational change in
health care and to enhancing
its quality and safety.
from Partnering with Patients and
Families to Design a Patient- and Family-
Centered Health Systempublished by the
Institute for Family-Centered Care (IFCC)
http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=PSbSm6g6BPVCcM&tbnid=v0j5PPLO9RJAqM:&ved=0CAUQjRw&url=http://www.speakingofsuicide.com/2013/04/14/fears-of-mental-hospital/&ei=pZ1JUvjeCK2yygHp6oDgCw&bvm=bv.53217764,d.aWc&psig=AFQjCNGgbqGxR-RNmRzwqNODT8mpwi7fOw&ust=13806422450346208/13/2019 2 Gillian Cappiello - Voice of Patient
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Why We Need Patient Engagement
Research shows that 1 in 2 patients are
disengaged and prefer to follow a passive
healthcare approach.
In spite of having access to technology such as
patient portals, less than 10% of patients
actually use these online tools.
They rely heavily on doctors to make all their
medical decisions while they take no initiative
to manage their own health.
(Deloitte, 2013)
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Why We Need Patient Engagement
(Deloitte, 2013)
Healthcare is expensive
for patients and for
nations.
Research shows that
patients who are actively
involved in their
healthcare are
significantly more likely
to practice positive
health behavior, resulting
in better health
outcomes.
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Why We Need Patient Engagement
Case studies show patient engagement delivers dramaticresults, such as:
40% reduction in emergency room consultations
20% to 35% reduction in hospital admissions
86% patient satisfaction 47% increase in the number of patients meeting cholesterol
goals
(Deloitte, 2013)
This reduces the cost to all
parties, minimizes patientsdiscomfort and increases
both the length and the
quality of their lives.
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Challenging the Engagement Gap
We do it
already!
Will it
work?
My patients
dont want it
What if they
dont do whatI think they
should do?
I dont have
the time!
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HOW DO YOU TRULY ENGAGE WITHAND INCLUDE THE VOICE OF
PATIENTS AND FAMILY MEMBERS?
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We're all in this together!
Kathy, Patient Advisor
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It comes down to conversation
We are talking to real people about real issuesthat affect their lives.
Content educates, informs, and promotes
conversation, leading to patient engagement.
If you want your patients to join the
conversation, you have to give them a reason
to do so. It has to be content your patients can really
relate to.
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Invite patients and families to share
their stories as one way to spark
improvement.
Patient participant, Expert Panel Meeting on Patient &
Family Partnerships, June 2006
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The Power of Storytelling
Everyone loves a story!
Stories have the potential to
evoke emotion, such as desire or hope
encourage us to go along for the journey
offer a transformation between thebeginning, and the end
motivate us to act
In other words, stories ENGAGE
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http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=OO-7I8i-IeJrkM&tbnid=jai3GKad5sB77M:&ved=0CAUQjRw&url=http://www.freshlygroundproductions.com/?cat=59&ei=kI1JUq-LMoLcyQGjzYHIBA&bvm=bv.53217764,d.aWc&psig=AFQjCNFDn_WoRgdwmXXn0oJ4IB0TERth3Q&ust=13806383915271018/13/2019 2 Gillian Cappiello - Voice of Patient
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Shared Decision Making explicitly
recognizes a patients right to make
decisions about their care, ensuringthey are fully informed about the
options they face.(Coulter & Collins, The Kings Fund, 2011)
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What is Shared Decision Making?
1
Two or more participants: Provider & Patient(and family member)
Information is shared: Knowledge (provider);Values and preferences (patient)
Participants build consensus
Agreement is reached
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Other Formal Wa s to En a e Patients and
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Other Formal Ways to Engage Patients and
Families
Surveys
Focus Groups
Interviews; Leadership Rounding
Shadowing; Ethnography
Patient & Family Advisory Councils (PFAC)
Resident Councils Organizational Committees and Task Forces
Community Circles
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Focus Groups
An excellent tool for
understanding howpeople feel or think
about issues, ideas,
products or services
The use of neutralmoderators in safe
environments encourages
comments of all types,
positive and negative
An important goal in
conducting listeningsessions is to find out
where and how we can
improve
http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=7LU88m8_2btnwM&tbnid=E3Ll1Ogr44L8DM:&ved=0CAUQjRw&url=http://www.msresearchinc.com/focus%20group.html&ei=uadJUrfeH-egyQHBy4GABQ&bvm=bv.53217764,d.aWc&psig=AFQjCNHcA-BF6jXlU_8dJ4mQ3YWukPhatA&ust=13806449227280318/13/2019 2 Gillian Cappiello - Voice of Patient
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Leadership Rounding
Engage at least one patient and/or family member tolearn about their care experience in the hospital. Ask:
How has your experience been so far?
Is the environment comfortable? Have you been able
get enough rest? Is there information we can provide that would help
you better manage their condition?
Are there any suggestions for things we can do better?
Is there anything else we can do to help meet yourneeds?
Is there anyone in particular we can recognize orthank?
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Patient and Family Shadowing
The purpose of Shadowing is to help Care
Givers see the Care Experience from the
patients and familys point of view
It involves direct, real-time observation of
patients and families as they move through
each step of a Care Experience in any health
care setting
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Patient and Family Shadowing
We watch what people
do (and do not do) and
listen to what they say
(and do not say). Theeasiest thing about the
search for insightin
contrast to the search for
hard datais that itseverywhere and its free.
OBSERVATIONS
EMPATHY
INSIGHTS
Tim Brown, Change by Design
Ethnography: Human Experience Projects at
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Ethnography: Human Experience Projects at
Alegent Health, Omaha Nebraska USA
If you want to
understand
peoples needs,
forget about your
problems and
worry about their
lives.
The purpose is:o to focus on the patient experience
o innovation
o to gather input for facility & process
design
Based on direct observation and
interaction
Throughout the journey there iscontinuous audio and video recording of
the interactions, and picture journaling to
document observations
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The Purpose of a PFAC
To provide a patient-centered view of the organization
To provide an avenue to actively dialogue withconsumers
To provide ongoing feedback to identify issues thatimpact patient services and aid in establishingorganizational priorities
To build community relationships and increaseconsumer awareness and education
To extend service excellence initiatives
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Creating a Successful PFAC
Support from the Top Membership Selection & Recruitment
Council Structure
By-laws: Responsibilities of Council Members; Size, Terms, Meetings,Officers, Compensation; Committees
New Member Orientation
Supporting the Council
Sustaining the Council Tools & Resources for Councils
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Support from the Top
Successful implementation of patient
advisory groups and incorporating the
philosophies of patient- and family-centered
care begins with support from the top.from Partnering with Patients and Families to Design a Patient- and
Family-Centered Health Systempublished by the Institute for Family-
Centered Care
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PFAC
PCCSteering
Committee
Quality
ImprovementStructure
Links in the Organizational Structure
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Health Care Committees
Patient and family members participate in policy andprogram development and sit on standing and ad hoccommittees, including:
Service excellence
Interviewing and hiring
Staff orientation and
education
Research Ethics
Leadership search
Credentialing
Strategic planning
Facility design
Patient/family education
Discharge/transition
planning Quality improvement
Patient Safety
Risk Management
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Examples of Projects
Peer-to-Peer mentor programs Patient & Visitor Navigation Guides to health care
services
Expanding use of Rapid Response Teams
Changing admitting & waiting room procedures
Redesigning the mammography experience
Creating solutions for restitution to families with
grievances Planning, presenting, and evaluating an annual patient-
and family-centered care conference
Sharing experience on video; use to educate staff and
other patients and families
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Beyond the Organization
In addition to National & International PFACs, patientand families advisors from across the country
participate in a variety of state, national and
international councils that influence health care policy,
including:
The National Patient Safety Foundation (NPSF)
The Institute for Healthcare Improvement (IHI)
Joint Commission International (JCI)
The World Health Organization (WHO)
Consumers Advancing Patient Safety
Partnership for Healthcare Excellence
Engaging Patients in Improving
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CommunityCircles
Engaging Patients in Improving
Ambulatory Care
RWJF Compendium of Tools, March 2013
https://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=L7Mm3RELIIg57M&tbnid=7IuD09Koj3IzgM:&ved=0CAUQjRw&url=https://app.azdes.gov/nmanagerpro/forms/newsletterarchive.asp?idNewsletter=19&ei=VYRJUu-aFLLlyAHQ2YDoDQ&psig=AFQjCNHJ0UL50shXylL1rx4U5YKs4wfq9A&ust=13806357929892128/13/2019 2 Gillian Cappiello - Voice of Patient
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Engaging the Community
There is an inherent need to discern theneeds, come to know and appreciate the local
culture, and respond to the healthcare needs
identified ensuring the active voice ofrepresentative of the population served.
Holly M. Gartmayer-DeYoung, CEO
Eastport Health Care, Inc.
Maine USA
http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=1zhp0626CnsYKM&tbnid=wuS7fXNup8-sOM:&ved=0CAUQjRw&url=http://pros.nyaprs.org/pros-talks/&ei=NYNJUvabGOjcyQHu2IA4&psig=AFQjCNHJ0UL50shXylL1rx4U5YKs4wfq9A&ust=1380635792989212http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=1zhp0626CnsYKM&tbnid=wuS7fXNup8-sOM:&ved=0CAUQjRw&url=http://pros.nyaprs.org/pros-talks/&ei=NYNJUvabGOjcyQHu2IA4&psig=AFQjCNHJ0UL50shXylL1rx4U5YKs4wfq9A&ust=13806357929892128/13/2019 2 Gillian Cappiello - Voice of Patient
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Community Circles
A community circle brings multi-stakeholderstogether to converse and plan better strategies for
several public health problems in the community.
General discussion topics offered could include:
Patient Centered Medical Home
Integration of Behavioral Health Services
Health Care Reform
Patient and Family Engagement Palliative Care
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It is all too easy to welcome patient or family
participation on a committee or two and then
call the hospital patient- and family-centered.
True change occurs only when patients and
families are equal collaborators in the wide
range of decisions that are made in health care
settings, from establishing vision for theorganization and design of the facilities to
hiring, policy development, quality improvement
efforts, and bedside care.
From: Expert Panel Meeting on Patient and Family Partnerships,June 2006.
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Resources
The Putting Patients First Field Guide: Global Lessons in Designing and
Implementing Patient-Centered Care - Planetreehttp://planetree.org/?page_id=226
Strategies for Leadership: Patient- and Family-Centered Care Toolkit.- AHA
http://www.aha.org/advocacy-issues/quality/strategies-patientcentered.shtml
Informed Medical Decisions Foundation
http://informedmedicaldecisions.org/what-is-shared-decision-making/
Advancing the Practice of Patient- and Family-Centered Care - IPFCC
http://www.ipfcc.org/pdf/getting_started.pdf:
Go Shadow - University of Pittsburg Medical Center; Patient and Family Centered
Care: : http://www.pfcc.org/go-shadow/
Engaging Patients in Improving Ambulatory Care - Robert Wood Johnson
Foundation: http://www.rwjf.org/en/research-publications/find-rwjf-
research/2013/03/engaging-patients-in-improving-ambulatory-care.html
How to Develop A Patient and Family Advisory Council; Alegent Health Human
Experience Project; Leadership RoundingMy Planetree Online Community
(Members only) http://myplanetree.org
http://www.aha.org/advocacy-issues/quality/strategies-patientcentered.shtmlhttp://informedmedicaldecisions.org/what-is-shared-decision-making/http://www.ipfcc.org/pdf/getting_started.pdfhttp://www.pfcc.org/go-shadow/http://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://myplanetree.org/page.aspx?name=HomePageJune2013http://myplanetree.org/page.aspx?name=HomePageJune2013http://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.rwjf.org/en/research-publications/find-rwjf-research/2013/03/engaging-patients-in-improving-ambulatory-care.htmlhttp://www.pfcc.org/go-shadow/http://www.pfcc.org/go-shadow/http://www.pfcc.org/go-shadow/http://www.pfcc.org/go-shadow/http://www.ipfcc.org/pdf/getting_started.pdfhttp://www.ipfcc.org/pdf/getting_started.pdfhttp://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://informedmedicaldecisions.org/what-is-shared-decision-making/http://www.aha.org/advocacy-issues/quality/strategies-patientcentered.shtmlhttp://www.aha.org/advocacy-issues/quality/strategies-patientcentered.shtmlhttp://www.aha.org/advocacy-issues/quality/strategies-patientcentered.shtmlhttp://www.aha.org/advocacy-issues/quality/strategies-patientcentered.shtmlhttp://www.aha.org/advocacy-issues/quality/strategies-patientcentered.shtml8/13/2019 2 Gillian Cappiello - Voice of Patient
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Gillian Cappiello
Planetree Experience Advisor
Tracy Walsh
Planetree Experience Advisor
mailto:[email protected]:[email protected]:[email protected]:[email protected]