Jim Conway, FACHE Adjunct Faculty, Harvard School of Public Health Principal, Pascal Metrics Senior Fellow, Institute for Healthcare Improvement Eureka! Mounting Evidence on the Power of Patient & Family Centered Health Care 1

Outline: Patient and Family Centered Care Key Drivers: Push and Pull Definitions Examples Evidence & Gaps Flawed Mental Models Journey Forward 2

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

4 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 4

PFCC. No Longer “If” Instead “When” & “How” 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, States Accreditors AARP, Consumer Reports NQF, NPP, Picker, Planetree, IFCC, IHI, Lucian Leape Institute, WHO Pull—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: ACHE It’s the right thing to do 5

Health Reform Priorities 1.Care coordination for chronic disease 2.Overuse 3.Palliative end-of-life care 4.Patient and family engagement 5.Population health 6.Safety 6

Organizations with the Best Demonstrated Integrated Outcomes Will Win 7 Clinical FinancialService Experience

Patient and Family Centered Care: Definitions Care that is reliably: Safe, Effective, Patient Centered, Timely, Efficient, Equitable 8 IOM Crossing the Quality Chasm 2001

IOM: Patient and Family Centered Care 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 9 IOM Crossing the Quality Chasm 2001

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 10 American Hospital Association and the Institute for Family-Centered Care. (2004). Strategies for leadership—Patient and family-centered care toolkit. Washington, DC.

Patient and Family Centered Care Is… Person Centered Care Is… LocationExamples EnvironmentCommunity, 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-systemClinic, 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” 11 Balik B, Conway J, Zipperer L, Watson J. Achieving an Exceptional Patient and Family Experience of Inpatient Hospital Care. Cambridge, Massachusetts: 2011.

Patient and Family Centered Care Isn’t Just Threads It is a fabric of integrated, reinforcing strategies and partnerships Community Organization Microsystem Locus of care 12

Evidence Base General Studies, Reviews, and Resources

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:

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,

Research suggests that patients can contribute significantly to health-care improvements, in particular through their assessment of non- clinical aspects of care, their assessment of the care environment and their observations and experience with the care process. Groene O. Patient centredness and quality improvement efforts in hospitals: rationale. International Journal for Quality in Health Care 2011; Volume 23, Number 5: pp. 531–537.

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. 17 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 Feb 9. [Epub ahead of print] Center for Patient Safety, Dana-Farber Cancer Institute, Boston, MA, USA.

18 We found positive associations of FCC with improvements in efficient use of services, health status, satisfaction, access to care, communication, systems of care, family functioning, and family impact/cost. There was little available evidence, however, for some outcomes, including cost and transition.

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Patient and Family Centered Care: Academic Centers Six Core Elements of Sustainable Change Visionary leadership: Each organization is characterized by strong, visionary leadership committed to achieving the goals of patient and family-centered care. Dedicated champion: A dynamic, dedicated champion must be responsible for driving necessary changes at the operational level. Partnerships with patient and families: Central to the change strategy is developing active collaboration with patients and families on multiple levels, including policy and planning, patient care, and medical education. Focus on the workforce: Principles of patient and family-centered care must be incorporated into human resource policies that determine the way staff are recruited, trained, and rewarded. Effective communication: Clear communication at every level, from board to management to front line workers to patients and families, is required to spread and reinforce patient and family-centered values and procedures. Performance measurement and monitoring: Continuous measurement and monitoring are needed to assess progress and identify new opportunities for improving performance. Shaller D, Darby C. High Performing Patient and Family Centered Academic Medical Centers Picker Institute.

Differences in health literacy level were consistently associated with increased hospitalizations, greater emergency care use, lower use of mammography, …. Among intervention studies…the strength of evidence for specific design features was low or insufficient.

Evidence Base Specific Examples

Reform Brings “It” to a Place Near You In / Across ALL Settings of Care, Especially Home Patient / Person / Family Centered Care Consumer Engagement Public Engagement Personal Engagement Consumer Activation Community Engagement Shared Decision making, and more 25

“If the public only did what was expected of them, we wouldn’t have this problem!” State Healthcare Official QCC Meeting 26

Final Rand-based Roadmap CC Strategies Eleven Key System-wide Efforts Adopt comprehensive payment reform Adopt and use health information technology Implement evidence-based coverage informed by comparative effectiveness information Develop health resource planning Support system redesign Implement health plan design innovation to promote use of high-value care Enact malpractice reform and peer review protections Implement administrative simplification Engage consumers Encourage healthy behaviors Further promote transparency 27

A Framework For Engagement 28 Basic Conditions for engagement: 1.Respect 2. Transparency 3. Culturally competent communication “Plan” “Do” “Study” “Act” Personal Experience Microsystem Organization Environment Ask Listen Inform Participate Evaluate Follow through

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

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 30

31 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: 2011.

Primary and Secondary Drivers Exceptional Patient Experience Exceptional patient and family inpatient hospital experience (safe, effective, patient-centered, timely, efficient, equitable) as measured by HCAHPS willingness to recommend 32

Primary Drivers Governance and executive leaders demonstrate that EVERYTHING in the culture is focused on patient and family centered care, practiced everywhere in the hospital (individual, microsystem, organization) 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, evidence based care 33

Innovations to Advance Genuine Partnerships with Patients/Families 34 IOM RuleExample Care is customized Open visitation Family participation in care Patients establish daily goals Patient is source of control P&F activated rapid response teams Patient choice in mail selection P&F participation in change of shift report and multidisciplinary rounds Knowledge is 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 :4.

“Mental models are deeply held internal images of how the world works, images that limit us to familiar ways of thinking and acting. Very often, we are not consciously aware of our mental models or the effects they have on our behavior ” Peter Senge, MIT 35

Finding Flawed Mental Models in Play

Conclusion. The potential for engaging patients in patient safety is considerable but further research is needed to examine the influences on patient involvement, the limits and the possible dangers. Patients can act as safety buffers during their care but the responsibility for their safety must remain with the health care professionals. Davis R, Jacklin R, Sevdalis N, Vincent C. Patient involvement in patient safety: what factors influence patient participation and engagement? Health Expectations. 10 (3) 259–267.

Patient-centred care is a widely used phrase but a complex and contested concept. Lewin SA, Skea ZC, Entwistle VA et al. Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst Rev 2001;4:CD

Moving Forward Focus on patient and family centered care / personal and public engagement and its link to outcomes will only intensity Less rhetoric and more practice design Evidence base is strong in many areas and weak in others Challenging our mental models against the evidence will be essential Link strategies and tactics to organizational needs Nothing will beat partnerships as we move forward; Care, Microsystems, Organizations & Systems, Community 39

A Powerful Evolution Do it to me. Do it for me. Do it with me. Martha Hayward Patient Advocate

“Quality improvement begins with love and vision. Love of your patients Love of your work If you begin with technique, improvement won’t be achieved.” A. Donabedian, M.D 41

Questions and Comments 42

Other Resources Associations and Groups Joint Commission 8_04_10.htm Picker Institute IHI WHO Patients for Patient Safety _patient/en/ Institute for Family Centered Care Planetree Partnership for Healthcare Excellence Consumers Advancing Patient Safety New Health Partnerships 43