pqcnc 2014 annual meeting jim conway
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Jim Conway
Adjunct Faculty
Harvard School of Public Health
The Power and Privilege of
Patient and Family Centered Care
PQCNC
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Where does PQCNC Want Me to Go?
Comment on the difference between "patientexperience" and "patient engagement
Discuss the value of including patients/family
members as vital members of health carequality improvement teams
Describe "what it takes" to make patients/familymembers fully integrated members of quality
improvement teams
Highlight the importance of Leadership in patientand family engagement efforts
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How Do You Want Me to Get There?
PQCNC Ten Commandments1. Thou Shalt Not Simply Trot Out thy Usual Shtick.
2. Thou Shalt Dream a Great Dream, or Show Forth a Wondrous New Thing,Or Share Something Thou Hast Never Shared Before.
3. Thou Shalt Reveal thy Curiosity and thy Passion.
4. Thou Shalt Tell a Story.
5. Thou Shalt Freely Comment on the Utterances of Other Speakers for theSake of Blessed Connection and Exquisite Controversy.
6. Thou Shalt Not Flaunt Thine Ego. Be Thou Vulnerable. Speak of thyFailure as well as thy Success.
7. Thou Shalt Not Sell from the Stage: Neither thy Company, thy Goods, thyWritings, nor thy Desperate need for Funding; Lest Thou be Cast Aside
into Outer Darkness.8. Thou Shalt Remember all the while: Laughter is Good.9. Thou Shalt Not Read thy Speech.10. Thou Shalt Not Steal the Time of Them that Follow Thee.
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Outline
Prologue: Definitions and Profound Learning
Dana-Farber Cancer Institute Journey Burden, Responsibility, Power
Patient and Family Centered Care Setting Expectations
Positioning for Success
Action
Challenges Outcomes
Moving Forward
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For your service to your patients,families, staff, and communities.
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Prologue
Definitions: Patient & Family Centered Care
Profound Learning: Childrens Hospital, Boston
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Patient Centered Care:
Picker Dimensions Respect for patient values, preferences
Coordination and integration
Information, communication, education
Physical comfort
Emotional support
Involvement of family and friends
Transition and continuity
Access to care
Gerteis M, et al. Through the Patients Eyes. San Francisco: Jossey-Bass: 1993.
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Four Key Concepts of PFCC
Dignity and respect:Providers listen and honor
patient and family perspectives and choices.
Information sharing :Providers share complete and
unbiased information in ways that are affirming anduseful.
Participation:In care and decision-making
Collaboration:In policy and program development,implementation and evaluation, as well as the
delivery of care
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American Hospital Association and the Institute for Family-Centered Care. (2004). Strategies
for leadershipPatient and family-centered care toolkit. Washington, DC.
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A set of beliefs and behaviors by patients,family members, and health professionals
and a set of organizational policies,
procedures and interventions that ensure
both the inclusion of patients and families as
central members of the health care team and
active partnerships with providers and
provider organizations.
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Patient Engagement Defined
A Leadership Resource for Patient and Family Engagement Strategies. Health
Research & Educational Trust, Chicago: July 2013. Accessed at www.hpoe.org
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Defining Patient Experience
http://www.theberylinstitute.org/?page=PEBENCHMARKING
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Patient Experience Defined
The Patient Experience refers to the quality and value
of all of the interactionsdirect and indirect, clinical
and non-clinicalspanning the entire duration of thepatient/provider relationship.
Deloitte
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I dont care who youare. I am going to stay
with my child.
Pediatric Mother, 1976
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Popper B, Black A, Ericson E, Peck D. A Case Study of the Impact of a Parent Advisory Committee on Hospital Design and Policy,
Boston Children's Hospital. Childrens Environment Quarterly. Vol 4, No. 3, Fall 1987.
Just cause youre
poor doesnt mean
youre stupidPediatric Mother, ~1984
There is no force in the world stronger than a mother in
your face advocating for her kid J. Conway
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13
DANA-FARBER ADMITS DRUG OVERDOSE CAUSED
DEATH OF GLOBE COLUMNIST, DAMAGE TO SECOND
WOMAN
When 39-year-old Betsy A. Lehman died suddenly last Dec. 3 at Boston's Dana-Farber
Cancer Institute, near the end of a grueling three-month treatment for breast cancer, it
seemed a tragic reminder of the risks and limits of high-stakes cancer care. In fact, it
was something very different. The death of Lehman, a Boston Globe health columnist,
was due to a horrendous mistake: a massive overdose of a powerful anticancer drug
that ravaged her heart, causing it to fail suddenly.
3/23/1995
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Key Levers / Learning in Journey The responsibility and power of all
leadership [trustee, clinical andadministrative] over safety
The need for relentless vigilance tosafety, risk, error, near-miss, harm
Addressing the multiple victims of error The crucial role the design of systems
and application of technology play insupport of safe practice by excellentstaff
The synergy of interdisciplinary practiceand team work
Patient and Family Centered Care
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http://www.asco.org/ASCOv2/Education+%26+Training/Educational+Book?&vmview=edbk_detail_view&confID=40&abstractID=615
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Set the Expectation
Position People for Success
Hold Them Accountable
Without clarity of expectations,
deviance cant stand out.Roger Berkowitz,
Trustee, DFCI
CEO, Legal Sea Foods1/13/2014 15
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1996 GOVERNING BOARD PRORITY
DFCI will be patient and family
centered in the model of the IPFCC.
Patients and families will be part of
all care decision making structuresand processes
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Expectations for PFCC
are clear in PQCNC1. Strongly disagree
2. Disagree
3. Neither
4. Agree
5. Strongly Agree
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Expectations for PFCC are clear in
my healthcare organization1. Strongly disagree
2. Disagree
3. Neither
4. Agree
5. Strongly Agree
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Strategies: Positioning for Success
All Staff
Set clarity ofexpectation
Engaging Board &
leadership Key leadership on-
point
Integrating acrosscare
Listening to concerns
Learning from priorfailures
Coaching, training,
IPFCC programs Pacing and quick wins
Celebrating
Providing support Modeling from the
top
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DFCI: Structures & Processes
Patient and Family Partnerships
Committees:Board Quality Committee
Patient Safety Committee
Strategic Planning
Operating
Leadership Interviews
New Employee Orientation
Side by Side
Resource Centers
Rescue events NPSF & IHI meetings
Pediatric ER Fast Track
End of Treatment
Renovation / Process Redesign
Patient Flow
Understanding Insurance
Embracing Diversity
Adult Safety Rounding
New patient access
Task Force on Disclosure
Working on the Wait Customer Service Training
Falls Task Force
Medication reconciliation
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Reid Ponte P, Conlin G, Conway JB, et al. Making patient-centered care come alive: achieving full integration of the patient's perspective. J Nurs Adm 2003; 33(2):82-90.
Reid Ponte P, Connor M, DeMarco R, Price J. Linking patient and family-centered care and patient safety: the next leap. Nurs Econ 2004; 22(4):211-3, 215.
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Implementation Challenges
Nice, not necessary; PR
Staff & patients: people inVERY different places
You are crazy!
Fear of the unknown
We know what they
want
We are different! They will be in the way!
This will be a time hog
Silo: Its mine
Transparency of realities
Shifting power balance
Shifting priorities Learning to ask, listen,
listen more, not jumping
Getting and embracing
diversity Ongoing staff orientation
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Positive Outcomes
All proud of PFCC practice
Problem identification
What they want, wewant!
We are finding things wedidnt know!
Prioritized improvement
Improved outcomes
Informed growingevidence base
Interdisciplinarypartnership
New powerful allies andadvocates
Huge external recognition
Presentations/publications
Funding: Grants & donors Care connection all levels
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I have seen very positive outcomes
from our organizational efforts to
deliver PFCC.1. Strongly disagree
2. Disagree
3. Neither4. Agree
5. Strongly Agree
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15 Years Later
Amazing Work Continues
http://www.dana-farber.org/abo/news/publications/pop/archive.html
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Whats Getting Rewarded!
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Conclusions. Most hospitalized
patients participated in someaspects of their care.
Participation was strongly
associated with favorable
judgments about hospitalquality and reduced the risk of
experiencing an adverse event.
Weingart SN, Zhu J, Chiappetta L, Stuver SO, Schneider EC, Epstein AM, David-Kasdan JA, Annas CL, Fowler FJ Jr, Weissman JS.
Hospitalized patients' participation and its impact on quality of care and patient safety. Int J Qual Health Care. 2011 Feb 9. [Epub
ahead of print] Center for Patient Safety, Dana-Farber Cancer Institute, Boston, MA, USA.
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Whats Helping Patient Safety Research?
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Fast Forward to 2013A Joint Presentation to International Leaders at
Harvard University
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Shari Berman, Co-Chair, Adult PFAC, DFCI
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Patient and Family Advisory Councils
Mandatory in Mass HospitalsThe purpose of this letter is to inform
hospitals of their obligation to establish
a Patient and Family Advisory Council
(PFAC), as set out in the hospital
licensure regulation effective June 12,2009. A copy of these sections is
enclosed. The regulations require each
hospital to establish a PFAC by October
1, 2010; and each hospital must prepare
a report outlining its plan to establish aPFAC no later than September 30,
2009
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http://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdf
Whats Helping Drive State Policy?
P ti t d F il C t d C
http://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdfhttp://www.ipfcc.org/advance/topics/Review-of-PFAC-2011-Reports.pdf -
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Patient and Family Centered Care
A Dynamic Push/Pull
PushMaking the Status QuoUncomfortable
Consumer Movement:
It isnt ours alone to decide
Patient Rights
Patient Safety: Voice and face of harm
AHRQ patient reporting
Transparency
Health Reform: Politicians,
Governments, Nations, States Accreditors
AARP, Consumer Reports
NQF, NPP, Picker, Planetree, IFCC,
IHI, Lucian Leape Institute, WHO
Making the Future Attractive
Organizing the healthcare systemaround the patient and family
Optimizing the patient experience Correlates with other outcomes
including staff satisfaction andfinancial outcomes
Patient Centered Outcomes ResearchInstitute
Patient activation/self management Great stories and results busting out
all over: IHI BMJ International Forum Health care organizations Associations
Its the right thing to do
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Primary Drivers Inpatient PFCC
Governance and executive leaders demonstratethat NOTHING is more important in the culturethan patient- and family-centered carepracticed everywhere in the hospital.
The hearts and minds of staff and providers are
fully engaged. Every care interaction is anchored in a
respectful partnership anticipating andresponding to patient and family needs(physical comfort, emotional, informational,
cultural, spiritual and learning). Hospital systems deliver reliable quality care
24/7.
The care team instills confidence by providingcollaborative, evidenced-based care.
30http://www.ihi.org/IHI/Results/WhitePapers/AchievingExceptionalPatientFamilyExperienceHospitalCareWhitePaper.htm 1/13/2014
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Innovations to Advance Genuine
Partnerships with Patients/Families
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IOM Rule Example
Care is
customized
Open visitation
Family participation in care
Patients establish daily goals
Patient issource of
control
P&F activated rapid response teams Patient choice in meal selection
P&F participation in change of shift report and
multidisciplinary rounds
Knowledgeis shared
Access to medical records Providing effective teaching and facilitating learning
Needs are
anticipated
Conduct observations of patient experiences
Observe peace and quiet times
Taylor, Rutherford. The Pursuit of Genuine Partnerships with patient and family members; the challenge and opportunity
for executive leaders. Frontiers of Health Services. 2010. 26:4.1/13/2014
Patient and Family Centered Care Is
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Patient and Family Centered Care Is
Person Centered Care Is
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Location Examples
Environment Community,
Region, State,
Province
Community groups
Care Coordination, ACOs, Medical Homes
Advanced care planning, POLST, MOLST
School & church programs
Public health & other consumer campaigns
Organization Health System,Trust, Hospital,
Nursing Home
Experience SurveysP&F Councils, Advisors, Faculty
Resource Centers, patient portals
Access to help and care 24/7
Medication lists
Micro-system Clinic, Ward, Unit,
ED, Delivery
Parent, Advisors, & advisory councils
Open access, optimized flow
Family participation in rounding
Experience of
care
Bedside, Exam
Room, Home
Access to the chart
Shared care planning
Smart Patients Ask Questions
Balik B, Conway J, Zipperer L, Watson J. Achieving an Exceptional Patient and Family
Experience of Inpatient Hospital Care. Cambridge, Massachusetts: 2011.1/13/2014
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In health care, the overarching goal for providers, aswell as for every other stakeholder, must be
improving value for patients, where value is defined
as the health outcomes achieved that matter to
patients relative to the cost of achieving thoseoutcomes. Improving value requires either
improving one or more outcomes without raising
costs or lowering costs without compromising
outcomes, or both.Failure to improve value means, well, failure.
T. Lee & Michael Porterhttp://hbr.org/2013/10/the-strategy-that-will-fix-
health-care/
Strategy That Will Fix Healthcare
http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/http://hbr.org/2013/10/the-strategy-that-will-fix-health-care/ -
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IOM Report:
Best Care at Lower Cost
Improved patient engagement is
associated with better patient experience,health, and quality of life and better
economic outcomes, yet patient and
family participation in care decisions
remains limited.
iom.edu/bestcare
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Patient Clinician Partnerships
Specific Recommendation
Engaged, empowered patientsA learning
health care system is anchored on patient
needs and perspectives and promotes theinclusion of patients, families, and other
caregivers as vital members of the
continuously learning care team.
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We are collectively anchored on patient
needs and perspectives and we promote the
inclusion of patients, families, and other
caregivers as vital members of the
continuously learning care team.
1. Strongly disagree
2. Disagree
3. Neither4. Agree
5. Strongly Agree
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A Powerful Evolution
Do it to me.Do it for me.
Do it with me.Martha Hayward
Patient Advocate
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Questions, Comments
Quality improvement begins with love and vision.
Love of your patients. Love of your workIf you begin with technique,
improvement wont be achieved.
A. Donabedian, M.D381/13/2014
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Great New Resource
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http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/patfamilyengageguide/howtogetstarted/index.html
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Selected Bibliography for Conway
PresentationDFCI Articles Reid Ponte, P, Donlin G, Conway JB, Grant S, Medeiros C, Nies J, Shulman L, Branowicki P, Conley K. Making
patient-centered care come alive, achieving full integration of the patients perspective. JONA 2003; 33:82-90.
Conway J., Nathan DG, Benz E, et al. Key learning from the Dana-Farber Cancer Institutes ten-year patient
safety journey. In Am Soc Clin Oncol 2006 Ed Book. 42nd Annual Meeting, Atlanta, GA, 2006:615-619.
General PFCC Articles
Conway J, Johnson B, Edgman-Levitan S, Schlucter J, Ford D, Sodomka P, Simmons L. Partnering with patients
and families to design a patient- and family-centered health care system: a roadmap for the future. A work in
progress. Institute for Family-Centered Care and Institute for Healthcare Improvement; June 2006
Johnson B, Abraham M, Conway J, Simmons L, Edgman-Levitan S, Sodomka P, Schlucter J, Ford D. Partnering
with patients and families to design a patient- and family-centered health care system: recommendations and
promising practices. Bethesda, Maryland: Institute for Family-Centered Care and the Institute for Healthcare
Improvement; April 2008.
Balik B, Conway J, Zipperer L, Watson J. Achieving an Exceptional Patient and Family Experience of Inpatient
Hospital Care. IHI Innovation Series White Paper. Cambridge, Massachusetts: Institute for Healthcare
Improvement; 2011. Conway J. Public and Patient Strategies to Improve Health Systems Performance. In: Olsen LA, Saunders RS, and
McGinnis JM. Patients Charting the Course: Citizen Engagement in the Learning Healthcare System. The
Learning Healthcare System Series. 2011. Institute of Medicine.
1/13/2014
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