2 gillian cappiello - voice of patient

8/13/2019 2 Gillian Cappiello - Voice of Patient

1/40

THE VOICE OF THEPATIENT AND THE

FAMILY ALONG THE

CONTINUUM OF

PATIENT-CENTERED

CAREGillian Cappiello, Planetree

KPJ HEALTHCARE CONFERENCE &

EXHIBITION 2013


2/40

How are we doing listening to patients?


3/40

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.


4/40

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=1360129025186500


5/40

#1 Dismissal / trivialization of the patient voice


6/40

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


7/40

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=1380642245034620


8/40

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)


9/40


(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.


10/40


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.


11/40

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!


12/40

HOW DO YOU TRULY ENGAGE WITHAND INCLUDE THE VOICE OF

PATIENTS AND FAMILY MEMBERS?


13/40

We're all in this together!

Kathy, Patient Advisor


14/40

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.


15/40

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


16/40

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


17/40
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=1380638391527101


18/40

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)


19/40

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


20/40

Other Formal Wa s to En a e Patients and


21/40

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


22/40

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=1380644922728031


23/40

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?


24/40

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


25/40

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


26/40

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


27/40


28/40

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


29/40

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


30/40

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


31/40

PFAC

PCCSteering

Committee

Quality

ImprovementStructure

Links in the Organizational Structure


32/40

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


33/40

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


34/40

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


35/40

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=1380635792989212


36/40

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=1380635792989212


37/40

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


38/40

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.


39/40

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.shtml


40/40

Gillian Cappiello

Planetree Experience Advisor

[email protected]

Tracy Walsh

Planetree Experience Advisor

[email protected]
mailto:[email protected]:[email protected]:[email protected]:[email protected]

2 gillian cappiello - voice of patient

Documents