1. 1 AF4Q Sue Sheridan Director of Patient Engagement Better Outcomes: Engaging Patients as Partners – From Research to Care

2. 2 Overview Overview of PCORI What outcomes are important to patients? What is a patient-centered healthcare system? Patient safety case study of improving outcomes through patient engagement and partnership Opportunities for patient engagement at PCORI

3. About PCORI An independent research institute authorized by Congress through the Patient Protection and Affordable Care Act Funds comparative clinical effectiveness research (CER) based on outcomes important to patients Engages patients and other stakeholders throughout the research process

4. Patient-Centered Outcomes Research Institute (PCORI) PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.

5. Who Are Our Stakeholders? PCORI Community Patient/ Consumer Caregiver/F amily Member of Patient Clinician Patient/ Caregiver Advocacy Org Hospital/ Health System Training Institution Policy Maker Industry Payer Purchaser

6. Evaluation ENGAGEMENT Engagement as a Path To Useful, High-Quality Research Proposal Review; Design and Conduct of Research Topic Selection and Research Prioritization Dissemination and Implementation of Results

7. Why Engage Patients in Research? (What do patients contribute?) “Lived experience ” of a condition, disease or suboptimal care Research questions that are important to patients Outcomes important to patients such as quality of life Focus on patient-centeredness, ethics, safety, and urgency Connections to other patients like them, which facilitates recruitment and dissemination of research findings Establishing trust and a sense of legitimacy in its findings 7

8. We Require Patient-Centeredness and Patient and Stakeholder Engagement Patient and Stakeholder Engagement Patients are partners in the planning and conduct of the research as well as the dissemination of the research results (not just “subjects”) Active and meaningful engagement between scientists, patients, and other stakeholders in the research project Patient-Centeredness Research questions and outcomes should reflect what is important to patients and caregivers

9. The Research We Fund is Guided by Our National Priorities for Research Assessment of Prevention, Diagnosis, and Treatment Options Improving Healthcare Systems Communication & Dissemination Research Addressing Disparities Accelerating PCOR and Methodological Research

10. Engagement Rubric Patients and other stakeholders are engaged in: Planning the Study Conducting the Study Disseminating the Study Results PCOR Engagement Principles

11. 11 Ten Things We Know to Be True: #1. “Focus on the user and all else will follow” Google Principle

12. What Outcomes Are Most Important to Patients: A Disease Model (Cochrane Synthesis) Figure 17.1.a: Classification of clinical trial outcomes with illustration of those most important to patients Higgins JPT, Green S (editors). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane Collaboration, 2011. Available from www.cochrane-handbook.org.www.cochrane-handbook.org

13. What Outcomes Are Most Important to Patients: A Disease + Care Model Higgins JPT, Green S (editors). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane Collaboration, 2011. Available from www.cochrane-handbook.org.www.cochrane-handbook.org C. Vincent, A. Coulter Patient safety: what about the patient? A systematic review of evidence on the links between patient experience and clinical safety and effectiveness Cathal Doyle 1, Laura Lennox 1, 2, Derek Bell 1, 2Cathal Doyle 1Laura Lennox 1 2Derek Bell 1 2 Humane, empathic patient experience Freedom from medical injury e.g. dignity respect information collaboration e.g. infection medication error unsafe surgery

14. Can We Develop an Evolved Definition of Patient-Centered Care? Safe Based on outcomes important to patients Evidence based Activates patients to participate Respect for patients’ values, preferences, and expressed needs Coordination and integration of care Information, communication, and education (Honest about risks and benefits) Physical comfort Emotional support and alleviation of fear and anxiety Involvement of family and friends Transition and continuity Access to care Picker Principles of Patient-Centered Care….PLUS

15. What Does a Patient-Centered Healthcare SYSTEM Look Like?

16. Patient-Centered Healthcare System Outcomes Important to Patients (Patients, families and communities) Research Policy Healthcare Services Improvement Care Patient Engagement Evidence Implementation Patient-centered care Patient-Centered Outcomes

17. Case Study – Newborn Jaundice

18. P.I.C.K. Parents of Infants and Children with Kernicterus

19. Patient Education Materials

20. The JC, CDC, NQF P.I.C.K. Partnerships in Action: Policy Makers

21. P.I.C.K. Partnerships in Action: Nursing Organizations

22. P.I.C.K. Partnerships in Action: Researchers/Pediatric Community

23. Hospital Corporation of America P.I.C.K. Partnerships in Action: Research/Healthcare Organizations

24. P.I.C.K. Partnerships in Action: Research/US Government

25. Parent Information to Activate and Educate

26. Maternal and Child Health Bureau P.I.C.K. Partnerships in Action: Research/US Government

27. US Government- Department of Health and Human Services P.I.C.K. Partnerships in Action: National Parent Education Campaign

28. Tier 1 Up to $15,000 Up to 9 month term Tier 2 Up to $25,000 Up to 12 month term Tier 3 Up to $50,000 Up to 12 month term PCORI Funding Announcement Researchers who unsuccessfully submitted a PFA and need to improve proposal Pipeline to Proposal Awards 28 Or submissions to other PCOR/CER Funders

29. Tier I Pipeline Awards (Up to $15,000 for up to 9 months) Available to individuals, consumer/patient organizations, clinician(s), researcher(s) or a combination of the above to support:  Community building around an area of research interest to improve outcomes for patients  Creation of structure and communication strategies  Develop an understanding of PCORI, and “research done differently” 29

30. Tier II Pipeline Awards (Up to $25,000 for up to one year) Available to emerging research/non-research partnerships to support:  Data network and registry development  Development of infrastructure  Generation and refinement of research questions through community events, town hall meetings, etc. 30

31. Tier III Pipeline Awards (Up to $50,000 for up to one year) Available to advanced research/non-research partnerships, including those who submitted PCORI proposals and were not funded, to support:  PCORI research proposal (re)submission focusing on development of engagement plan  Research partnership skill development 31

32. Western Region Pilot Thirty Awardees Announced December 2013 Creating Healthy Communities: Engaging Native American and Spanish-Speaking Families and Sharing Family Wisdom to Reduce Childhood Obesity Improving the Lives of Alzheimer's Patients and their Caregivers: A Patient Centered Statewide Approach The Hispanic Family Asthma Outcomes Research Network Culturally Appropriate Options for Diabetes Prevention and Care for Low-Income Latinos 32

33. Western Region Pilot Thirty Awardees Announced December 2013 Establishing a Patient-Centered Research Community for Cystic Fibrosis Sepsis Survivors Engagement Project (SSEP) Healthy Outcomes for Older Foster Youth Creating the Patient Centered Primary Care Council in the Highland Hospital Adult Medicine Clinic: Strengthening Primary Care Together Health Literacy and the Patient Perspective in Primary Care Engaging Communities in the Fight Against Preterm Birth 33

34. Western Region Pilot Thirty Awardees Announced December 2013 Taking Care of Our Parents: Improving the Coordination of Care for Elderly Community Members Patient-Centered Transitions for Episodes of Surgical Care Puget Sound Asthma Coalition: A Community, Clinical, and Academic Partnership Making Stomach Cancer a Health Priority among Asian American Patient-Centered Outcomes for the Parkinson's Disease Community in Wyoming 34

35. http://www.pcori.org/events/2014/exploring-eugene- washington-pcori-engagement-awards-program Event Date and Time: Wednesday, November 19, 2014 - 01:00 pm to 02:00 pm EST Upcoming Webinar!

36. 36 Sue Sheridan, MIM, MBA Director, Patient Engagement Ssheridan@pcori.org Thank You