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The Power and Privilege of Patient and Family Centered Care

Jim Conway Adjunct Faculty Harvard School of Public Health JCONWAY@HSPH.HARVARD.EDU


Where does PQCNC Want Me to Go?

Comment on the difference between "patient experience" and "patient engagement Discuss the value of including patients/family members as vital members of health care quality improvement teams Describe "what it takes" to make patients/family members fully integrated members of quality improvement teams Highlight the importance of Leadership in patient and family engagement efforts
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How Do You Want Me to Get There? PQCNC Ten Commandments

1. 2. Thou Shalt Not Simply Trot Out thy Usual Shtick. 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 the Sake of Blessed Connection and Exquisite Controversy. 6. Thou Shalt Not Flaunt Thine Ego. Be Thou Vulnerable. Speak of thy Failure as well as thy Success. 7. Thou Shalt Not Sell from the Stage: Neither thy Company, thy Goods, thy Writings, 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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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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Definitions: Patient & Family Centered Care Profound Learning: Childrens Hospital, Boston


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 and useful. Participation: In care and decision-making Collaboration: In policy and program development, implementation and evaluation, as well as the delivery of care
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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Patient Engagement Defined

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.
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


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 the patient/provider relationship. Deloitte

There is no force in the world stronger than a mother in your face advocating for her kid J. Conway

I dont care who you are. I am going to stay with my child.

Pediatric Mother, 1976

Just cause youre poor doesnt mean youre stupid

Pediatric Mother, ~1984
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. 1/13/2014 12

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.

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Key Levers / Learning in Journey

The responsibility and power of all leadership [trustee, clinical and administrative] over safety The need for relentless vigilance to safety, risk, error, near-miss, harm Addressing the multiple victims of error The crucial role the design of systems and application of technology play in support of safe practice by excellent staff The synergy of interdisciplinary practice and team work Patient and Family Centered Care



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 Foods
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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 structures and processes



Expectations for PFCC are clear in PQCNC

1. 2. 3. 4. 5.

Strongly disagree Disagree Neither Agree Strongly Agree


Expectations for PFCC are clear in my healthcare organization

1. 2. 3. 4. 5.

Strongly disagree Disagree Neither Agree Strongly Agree


Strategies: Positioning for Success All Staff

Set clarity of expectation Engaging Board & leadership Key leadership onpoint Integrating across care Listening to concerns

Learning from prior failures Coaching, training, IPFCC programs Pacing and quick wins Celebrating Providing support Modeling from the top

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 Safety Rounding New patient access Task Force on Disclosure Working on the Wait Customer Service Training Falls Task Force Medication reconciliation


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.



Implementation Challenges
Nice, not necessary; PR Staff & patients: people in VERY 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


Positive Outcomes
All proud of PFCC practice Interdisciplinary partnership Problem identification New powerful allies and What they want, we want! advocates We are finding things we Huge external recognition didnt know! Presentations Prioritized improvement /publications Improved outcomes Funding: Grants & donors Informed growing Care connection all levels evidence base
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I have seen very positive outcomes from our organizational efforts to deliver PFCC.
1. 2. 3. 4. 5.

Strongly disagree Disagree Neither Agree Strongly Agree


15 Years Later Amazing Work Continues

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Whats Getting Rewarded!



Whats Helping Patient Safety Research?

Conclusions. Most hospitalized patients participated in some aspects of their care. Participation was strongly associated with favorable judgments about hospital quality 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. 1/13/2014 26

Fast Forward to 2013

A Joint Presentation to International Leaders at Harvard University

Shari Berman, Co-Chair, Adult PFAC, DFCI



Whats Helping Drive State Policy? Patient and Family Advisory Councils Mandatory in Mass Hospitals
The 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 a PFAC no later than September 30, 2009



Patient and Family Centered Care A Dynamic Push/Pull

PushMaking the Status Quo Uncomfortable

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 system around the patient and family Optimizing the patient experience Correlates with other outcomes including staff satisfaction and financial outcomes Patient Centered Outcomes Research Institute 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

Primary Drivers Inpatient PFCC

Governance and executive leaders demonstrate that NOTHING is more important in the culture than patient- and family-centered care practiced 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 and responding 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 providing collaborative, evidenced-based care.
http://www.ihi.org/IHI/Results/WhitePapers/AchievingExceptionalPatientFamilyExperienceHospitalCareWhitePaper.htm 1/13/2014


Innovations to Advance Genuine Partnerships with Patients/Families

IOM Rule Example

Care is Open visitation customized Family participation in care Patients establish daily goals
Patient is source of control P&F activated rapid response teams Patient choice in meal selection P&F participation in change of shift report and multidisciplinary rounds

Knowledge Access to medical records is shared Providing effective teaching and facilitating learning Needs are Conduct observations of patient experiences anticipated 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 31

Patient and Family Centered Care Is Person Centered Care Is

Environment Community, Region, State, Province Health System, Trust, Hospital, Nursing Home Clinic, Ward, Unit, ED, Delivery

Community groups Care Coordination, ACOs, Medical Homes Advanced care planning, POLST, MOLST School & church programs Public health & other consumer campaigns Experience Surveys P&F Councils, Advisors, Faculty Resource Centers, patient portals Access to help and care 24/7 Medication lists 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.


Strategy That Will Fix Healthcare

In health care, the overarching goal for providers, as well 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 those outcomes. 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-fixhealth-care/

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.

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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 the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.



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. 2. 3. 4. 5.

Strongly disagree Disagree Neither Agree Strongly Agree


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 work If you begin with technique, improvement wont be achieved.

A. Donabedian, M.D


Great New Resource




Selected Bibliography for Conway Presentation

DFCI 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.