1. The Power of Patient, Family, Public Engagement

2. Outline Patient / Family Centered Care: A Growing Expectation Patient and Family-Centered Care Defined Publicly Verifiable Elements of PFCC ─How’s your organization doing Designing PFCC into the Care and the County Council Business Case: Patient & Family-Centered Care The Time Is Now

3. “I don’t care who you are. I going to stay with my child.” Pediatric Mother, 1976 3

4. Patient and Family Centered Care A Dynamic Push/Pull Push—Making the Status Quo Uncomfortable Consumer Movement: ─It isn’t 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 activation/self management Great stories and results busting out all over: ─IHI BMJ International Forum ─Health care organizations ─Associations It’s the right thing to do 4

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6. Patient and Family Centered Care What is it? Per the IOM Care based on continuous healing relationships Customized according to patient needs and values Patient is the source of control Knowledge is shared and information flows freely Transparency is necessary Needs are anticipated

7. 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 Institute for Family Centered Care

8. It is also what clinicians want… …it is why they went into health care. …it just isn’t designed into health care.

9. Patient and Family Centered Care Is… Person Centered Care Is… 9 LocationExamples EnvironmentCommunity, County Council, Region, State Community groups Care Coordination, ACOs, Medical Homes Advanced care planning, POLST, MOLST School & church programs Public health & other consumer campaigns OrganizationHealth System, Trust, Hospital, Nursing Home Experience Surveys P&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”

10. Publicly Verifiable PFCC Examples of Current Practice Mission, vision, values Leadership, operations Advisors Quality improvement Personnel selection Environment and design Information and education Charting and documentation Care structures and support Experience of care 10

11. Discuss for 10 minutes Provide a few examples. How is your organization doing? What Patient & Family Centered Care Activities are Underway? How about public / community?

12. Leading Edge of Patient and Family Engagement ActionHospital Patients/Family on Boards or in Board Committees DFCI, Medical College of Georgia, Children’s of Cincinnati Patient and their Stories Starting Meetings Exempla, Children’s Cincinnati, Delnor, and many more Patients at Board RetreatsBIDMC, Boston Board Chair & CEO meeting patients monthly Springfield Hospital, Vermont Inclusion of Patients in Executive Walk Rounds Kaiser Permanente Patients on Advisory BoardsStoeckle Center, MGH Trustees and/or Senior Leaders attending PFACs Maine Medical Center, Spectrum PFACsDramatic increase

13. The PFCC Model at Magee Womens Joint Replacement Programs developed through patient and family shadowing Timely feedback and weekly meetings Systems approach: pre-op, surgery, post- and rehabilitation 13

14. The PFCC Model at Magee Womens 91.4% satisfaction excellent 99% not limited by pain post op 98% received the right antibiotic at the right time 0.3% infection rate in TJR Av LOS 2.8 days 93% discharged without aid 91% discharged directly home 14

15. What’s Getting Rewarded Around Here! April, 2008

16. Business Case: Patient- and Family-Centered Care “Nice but not necessary” X

17. Patient Experience Is Strongly Correlated With Other Key Outcomes Health outcomes ─Patient adherence ─Process of care measures ─Clinical outcomes Business outcomes ─Patient loyalty ─Malpractice risk reduction ─Employee satisfaction ─Financial performance Edgman-Levitan S., Shaller D. et al. The CAHPS Improvement Guide. Boston: Harvard Medical School: 2003.

18. Financial Benefits of Patient- Centered Care in Planetree Reduced length of stay Lower cost per case Decreased adverse events Higher employee retention rates Reduced operating costs Decreased malpractice claims Increased market share Charmel P, Frampton S. Building the Business Case for Patient Centered Care. HFM. March, 2008

19. What About the Challenges? We’re already doing a good job! Clinicians don’t have the time. Can we get away with doing just one thing? It’s someone else’s job. Lots of tokenism; checking the box. Paternalism. We know best and they don’t do what they are told. It doesn’t work here. “My patients and family members are too _______ (poor, non-compliant, illiterate, violent.)” “My patients don’t want to be engaged.” 19

20. From a policy perspective, the widespread implementation of policies to ensure patients’ rights, privacy, and confidentiality is noteworthy. Patient involvement in quality improvement activities, on the other hand, so far appears to be a more rhetorical exercise than a practice Groene O et al. Is patient-centredness in European hospitals related to existing quality improvement systems? Analysis of a cross-sectional survey (MARQuIS Study). Quality & Safety in Health Care, February 2009 20

21. The Time Is Now If health and/or healthcare is on the table, then the consumer (public, patient, family member) must be at the table, every table. NOW! Lucian Leape Institute, 2008

22. PFCC Will Take Leadership at Every Level Not an “if” but a when and how discussion. It’s a system to be designed and achieved. It’s a gift to be given. It’s a right to be realized. 22