PowerPoint Presentation

PCORI Board of Governors MeetingWashington, DCSeptember 24, 2012Sue Sheridan, Acting Director, Patient EngagementSusan Hildebrandt, Director, Stakeholder EngagementAnne Beal, MD, MPH, Chief Operating OfficerSharon Levine, MD, Chair, COECEngagement UpdatePatient-Centered Outcomes Research Institute 1Engagement: Questions to Consider1What recommendations does the Board have for reaching stakeholders who may not be part of established networks and are more difficult to reach?2What are the measures of success in engaging patients, caregivers, and stakeholders that the Board would like to see in the next 12 months?3How do we demonstrate and lead research done differently for patients, caregivers, stakeholders, and the research community? 2Patient-Centered Outcomes Research Institute ANNE BEAL2Presentation Outline

Review of Strategic PrioritiesEngagement Touch Points in the PCOR ProcessWorkshops

3Patient-Centered Outcomes Research Institute SUSAN3Engagement PrioritiesTo invite, value, and use the wisdom and experience of patients, caregivers, and other stakeholders nationwide in the PCORI research enterprise; eliminate barriers to participationEstablish a community of trained and informed patients and caregivers as valued partners who participate in all stages of the research enterpriseCommunicate transparently and regularly about PCORIs approach and methods for prioritization, decision making, and funding to all stakeholders to create trustEvaluate and refine patient engagement processes to continuously learn and incorporate best practices and methods for developing a robust and engaged community of stakeholders in PCORI workPCORI Strategic Plan

4Patient-Centered Outcomes Research Institute SUSANBuild community use examples of meetingsPlug community into research community4Advise Us as to What PCORIShould Study:Tell Us How We Are DoingReview Proposals andPartner in ResearchHelp Us Share the FindingsPatientsand StakeholdersPatient and Stakeholder Engagementin Patient-Centered Outcomes Research 5What questions are most important? (research prioritization)What outcomes should be studied? (topic generation)Review research proposals for impactand patient-centerednessParticipate in conducting researchHow can we improve on what we are doing and how we are doing it?How do we best communicateimportant research findings?Patient-Centered Outcomes Research Institute SUE5Patient View on Engagement in Research

6Patient-Centered Outcomes Research Institute SUE6Tell Us What PCORI Should StudyConduct patient and stakeholder testing of content and language on topic generation Web pageSolicit research topics in patient and stakeholder meetings and PCORI roundtablesHost workshopsPatient Workshop (October 27-28)Stakeholder Workshop (December 4)Prioritization Workshop (December 5)7Patient-Centered Outcomes Research Institute SUSAN WILL DO7Review Proposals andPartner in ResearchRevamped pilot projects reviewer recruitment processCreated a user-friendly application and process Reached out to extensive lists of key stakeholdersVetted reviewer applications in-houseContracted with expert vendor to develop merit review training specifically for patients and other stakeholdersWill engage patients and stakeholders in process improvement cycle8Patient-Centered Outcomes Research Institute SUESay that 1/3 of each study section will be comprised of patients, caregivers and other stakeholders.8Patients and stakeholders will be one-third of review panels

350 total applicants242 with prior grant review experience102 from patient community140 from stakeholder community58 selected in final vettingBased on balanced criteria

Goal is to build a database of lay reviewers of PCORI funding applicationsPatient and Stakeholder Reviewers9Patient-Centered Outcomes Research Institute SUE WILL DO*Notes:Patient includes Patient, Patient Advocate/Family Members, and Patient or Caregiver Association Representative Other Stakeholders include Health Insurance Issuer, Hospital Representative, Pharmaceutical, Device, and Diagnostic Manufacturer or Developer, Policy Maker, Caregiver, etc.

9Patient and Stakeholder Reviewers876432110Patient-Centered Outcomes Research Institute SUE 10This is exciting and will lead to positive outcomes. 17-year breast cancer survivor and want to see an end to the disease.Need to find ways to optimize healthcare system.Need for more research to meet current needs of patients.Served as a PCORI reviewer and experience was fascinating."Stakeholder engagement is essential to relevant and useful research and evaluation: from identification of study questions to dissemination and utilization of findings.Need to getpatients' perspective and find ways to get them involved.First time patients voice is being formalized."I want do my part as a patient, and I will be honored with this opportunity."It's about time this is happening in healthcare.Want to give back Expertise, and thisis a great learning opportunity.Source: Patient and Stakeholder Interviews. August 2012What We Heard From Reviewers11Patient-Centered Outcomes Research Institute SUE AND SUSANSUSAN WILL START WITH FIRST TWO CLOUDSSUE WILL DO LAST TWO CLOUDS1112Help Us Spread the WordPatient-Centered Outcomes Research Institute SUSAN WILL DOMake clear that we are still developing this area/best practices for dissemination.12Stakeholder View on Dissemination

13Patient-Centered Outcomes Research Institute SUSAN 1314Tell Us How We Are DoingPatient-Centered Outcomes Research Institute SUE WILL DOMake clear that we are still developing this area feedback and looking for best practices.14Patient Workshop: ObjectivesTransforming Patient-Centered Research: Building Partnerships and Promising Models(October 27-28: Washington, DC)Launch the creation of an informed and engaged communityCreate consensus recommendations for patient engagement inGenerating and prioritizing research questionsReviewing research proposals and the conduct of researchDisseminating and implementing research findingsEvaluating the success of PCORIs engagement effortsWrite a thought piece on promising practices in patient engagement in research

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Describe details of thought piece15Patient Workshop: Selection CriteriaInvitation list developed with the goal of inclusivenessBalance sought between and among disease incidence, prevalence, burden, and disparities in the United States (with emphasis on chronic conditions) Total attendance will be limited to 150 participants75% of participants will be patients, patient advocates, caregivers, and individuals from patient/caregiver advocacy organizations25% of participants will be a mix of PCORIs other stakeholders 16Patient-Centered Outcomes Research Institute SUE16Stakeholder Workshop: ObjectivesWhat Should PCORI Study?A Call for Topics From Patients and Stakeholders(December 4: Washington, DC)Solicit research topics for specific funding announcements using breakout sessions on PCORIs priority areas and generate listReport on draft prioritization process (topic of December 5 workshop), allow participants to experiment with applying it to their topics, and solicit feedback on the processReport on Patient Engagement Workshop participants reactions to PCORIs engagement strategies and to seek additional input

17Patient-Centered Outcomes Research Institute SUSAN17Stakeholder Workshop: Other CriteriaSpecific Experience With:Research or work in PCORI Priority AreasLeadership in PCORI Priority AreasThe health policy or research communitiesBroad membership or responsibility for health care delivery 18Patient-Centered Outcomes Research Institute SUSAN18Whats NextAdvisory PanelsAdditional WorkshopsState-Based Events19Patient-Centered Outcomes Research Institute SUSAN

We are very excited to be responsible for PCORIs engagement activities and are eager to discuss our work with you, and you will be hearing from us.

19Engagement: Questions to Consider1What recommendations does the Board have for reaching stakeholders who may not be part of established networks and are more difficult to reach?2What are the measures of success in engaging patients, caregivers, and stakeholders that the Board would like to see in the next 12 months?3How do we demonstrate and lead research done differently for patients, caregivers, stakeholders, and the research community? 20Patient-Centered Outcomes Research Institute ANNE BEAL20Appendix A: Patient Engagement Workshop OutlineAppendix B: Patient Engagement Workshop TimelineAppendix C: Stakeholder Engagement Workshop OutlineAppendix D: Organizations Contacted21AppendixPatient-Centered Outcomes Research Institute 21