Engaging Patients and Improving the Shared Decision-Making Process

1. Engaging Patients and Improving the Shared Decision-Making Process March 28, 2013 For Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#

2. Welcome & Overview- 5 mins Engaging Patients and Improving the Shared Decision-Making Process – 35 mins Discussion on Shared Decision-Making Process, 15 mins Wrap-up & Evaluation, 5 mins Agenda Michael Hager in+care Campaign Manager National Quality Center New York, NY michael@nationalqualitycenter.org Conversation opportunities throughout webinar

3. Welcome & Overview • This Partners in+care webinar is offered as part of the in+care Campaign. • The in+care Campaign is a national effort to improve retention in HIV care. • Webinars are one of many Partners in+care activities designed to engage people living with HIV/AIDS and their allies in the in+care Campaign. For more information: www.incarecampaign.org

4. This is a “public event.” If you have confidentiality concerns: Your names appear on-line in the list of webinar registrants -consider just listening to the audio or to viewing the webinar at a later time, after it is posted at www.incarecampaign.org All webinars are recorded - do not use identifying information when asking questions Participation Guidelines For Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#

5. Actively participate and write your questions into the chat area during the presentation; we will also have a “pop up” question exercise, and will pause for conversation during the webinar Do not put us on hold Mute your line if you are not speaking (press *6, to unmute your line press #6) The slides and recording of this and other Partners in+care webinars are available for playback and group presentations at www.incarecampaign.org – “Resources” tab Participation Guidelines For Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#

6. Patient Involvement Pop-up Question What barriers do you foresee in engaging patients directly in research or evaluation projects? (check all that apply) I am not ready to get involved in this type of work / We do not have patients ready to engage in this type of work I am very concerned about my / my patients’ confidentiality and privacy What are you talking about? This is great! Let’s do it! I have no opinion… Visit www.incarecampaign.org

7. Engaging Patients and Improving the Shared Decision-Making Process • Overview of the Patient-Centered Outcomes Research Institute (PCORI) • What is Patient-Centeredness • Overview of PCORI Methodology • Review of Current PCORI Projects Suzanne Schrandt, J.D. Deputy Director, Patient Engagement

8. Engaging Patients and Improving the Shared Decision-Making Process Suzanne Schrandt, J.D. Deputy Director of Patient Engagement

9. About PCORI • An independent non-profit research organization authorized by Congress as part of the 2010 Patient Protection and Affordable Care Act (ACA). • Committed to continuously seeking input from patients and a broad range of stakeholders to guide its work.

10. Our Mission and Vision Mission The Patient-Centered Outcomes Research Institute (PCORI) helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. Vision Patients and the public have the information they need to make decisions that reflect their desired health outcomes.

11. PCORI’s Board of Governors Represents the Entire Health Care Community PCORI Board of Governors, March 2012 in Baltimore, MD

12. PCORI’s Core Duties • Establish national research priorities • Establish and carry out a research agenda • Develop and update methodological standards • Disseminate research findings

13. PCOR Defined

14. What is Patient-Centeredness? • Does the proposed research compare the effects of treatment options that matter to patients? • Are these realistic choices faced by patients or other decision-makers? • Does the research focus on outcomes of interest to patients and their caregivers? • Outcomes of interest might include: health, health-related quality of life, functioning, symptoms, safety from medical harm, survival and satisfaction with care.

16. Tell us what PCORI Should Study Submit your questions online: www.pcori.org/questions

17. Review Research Proposals • PCORI invites professional and lay audiences to be reviewers of research applications • Help us support research that will be both scientifically rigorous and truly patient-centered • Learn more and apply online: www.pcori.org/get-involved/reviewers/

18. Partner in Research The engagement of patients and stakeholders should include: • Participation in formulation of research questions • Defining essential characteristics of study participants, comparators, |and outcomes • Monitoring of study conduct and progress • Dissemination of research results

19. Will include clinicians, researchers, patients, and other experts with appropriate experience and knowledge to help PCORI achieve its goals Will assure meaningful patient engagement in: Research activities Identifying research priorities and topics Conducting randomized clinical trials Performing special research studies Board Approval of Advisory Panel Members: March 26, 2013 Advisory Panel Kickoff and Training in Washington, DC: April 19-20, 2013 PCORI’s First Advisory Panels

20. From Priorities to Research Patients Can Use • Priorities • Results and Dissemination • Research Agenda • Funding Research Future priorities and agendas will be informed by the development process, ongoing stakeholder engagement, and PCORI’s research results.

21. National Priorities for Research and Research Agenda

22. PCORI Review Criteria

23. Methodology Standards

24. Advance the field of patient-centered outcomes research Support the identification of methodologies Identify gaps where methodological research needs further development PCORI’s Research Portfolio: 50 Pilot Projects

25. Patient Engagement and Shared Decision-Making: Pilot Projects

26. PCORI’s Research Portfolio: 25 Projects Funded in PFA Cycle I 9 Assessment of Prevention, Diagnosis, and Treatment Options Inaugural PFA Funding Cycle Totals (Cycle I) Slate of Awards Selected December 18, 2012 6 Improving Healthcare Systems 6 Communication and Dissemination Research 4 Addressing Disparities 25 Total 26

27. Patient Engagement and Shared Decision-Making: Cycle I Awards

28. Key Characteristics of Funded Projects • Patient-Centeredness – Is the proposed research focused on questions and outcomes of specific interest to patients and their caregivers? • Innovation & Potential for Improvement – Might the proposed research lead to meaningful improvement in patient health and is the approach novel or innovative in ways that make it likely to change practice? • Team & Environment – Do the researchers have appropriate experience and have they included in their team the relevant patients and other key healthcare community members, who are the focus of the study and would use its information?

29. Two Paths to Research Funding • Investigator Generated • Patient/Stakeholder Generated • PCORI issues broad funding announcements • PCORI and stakeholders generate and prioritize questions based on review criteria • Researchers partner with patients and stakeholders to generate questions • PCORI issues specific funding announcements for highest priority topics • Researchers, stakeholders apply review criteria in their applications • Researchers partner with patients and stakeholders to develop proposals • Peer review prioritizes applications by level of alignment with criteria • Peer review prioritizes applications by level of alignment with criteria Diverse research portfolio answering key questions for patients and clinicians

30. PCORI’s First Targeted Research Topics • Identified several high-priority, stakeholder-vetted topics for targeted PFAs • Jumpstarts PCORI’s long-term topic generation and research prioritization effort • Leverages stakeholder input from before PCORI’s existence • Allows us to build on our engagement work Research Topics:

31. Current Funding Opportunities

32. PCORI Funding Announcements (PFAs) • PCORI Funding Announcements (PFAs) are issued to support a portfolio of comparative clinical effectiveness research based on PCORI’s National Priorities for Research and Research Agenda. • www.pcori.org/funding-opportunities

33. PCORI Challenge • Competition to create a system for connecting healthcare researchers and patient partners to advance patient-centered comparative effectiveness research • Prizes: • Conceptual Model - $10,000 • Prototype - $40,000 • Key Dates: • December 14, 2012 - Submission period begins • April 15, 2013 - Submission period ends • May 15, 2013 - Winners notified • Spring 2013 - Winners announced at a national health conference

34. Connect with PCORI www.pcori.org

35. Engaging Patients and Improving the Shared Decision-Making Process How is your clinic currently improving patient involvement in direct care? Let us know your experiences in the chat room!

36. Engaging Patients and Improving the Shared Decision-Making Process What change is needed to ensure that patients are involved in their treatment decisions? Let us know your experiences in the chat room!

37. Partners in+care Resources Visit Web / Open the Toolkit www.incarecampaign.org - “Partners” tab Sign up for Partners in+care Networkwww.incarecampaign.org – “Partners” tab Join Facebook Send email to incare@NationalQualityCenter.org – “Facebook” in subject line Campaign Headquarters:National Quality Center (NQC)90 Church Street, 13th floor New York, NY 10007Phone 212-417-4730