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PCORnet: Building Evidence through Innovation and Collaboration


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Slide presentation from Day Two of the PCORnet Partners meeting. The January 21-2, 2014 meeting took place at the Brookings Institute. This event launched the development of the nation’s most ambitious and promising clinical research network aimed at delivering high quality care through patient-centered outcomes research.

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PCORnet: Building Evidence through Innovation and Collaboration

  1. 1. Patient Engagement within PCORnet Engelberg Center for Health Care Reform The Brookings Institution • Washington, DC January 21-22, 2014
  2. 2. Bray Patrick-Lake Patient Representative, Executive Leadership Committee, PCORnet Coordinating Center
  3. 3. Patients need relevant, high quality information for informed decision making Complex navigation of risk/benefit tradeoffs Dependent on where patients are in trajectory of the disease Delicate balance of co-morbidities Long term consequences vs. short term benefit Quality vs. quantity of life Respectful of cultural preferences 3
  4. 4. Based on my personal characteristics, what can I expect my outcome to be? WE DON’T KNOW Therapies reach market after study in cleanest population possible Smallest number of patients, shortest amount of time possible Results often an average; some receive benefit, others harm Subgroup analysis on single variables Things patients care about most are absent - QOL and PROs 4
  5. 5. The current system is broken; patients are over it. Incredible waste of resources on repetitive activities Unnecessary delays due to bureaucracy Recruitment and retention failures rampant Data that could help patients remains inaccessible Research results don’t get disseminated to patients or translated into decision support tools 5
  6. 6. Patients dream of … 6 A high quality clinical research system that is patient-centered and efficient, enabling reliable and timely access to evidence-based prevention & treatment options that are responsive to patients’ individual needs Maybe we should ask patients how to achieve this …
  7. 7. 7 Patient Designer of Research Creator of Disease Specific Infrastructure Driver of National Research Infrastructure Participant in Research Activated Patient Reviewer of Research Evolution of patient engagement in research: PCORnet’s history in the making
  8. 8. PCORnet and its partners make the dream a reality Dream team of research and patient experts working on PCORnet Historic amount of patient engagement in research Unprecedented opportunities for collaboration, knowledge sharing, and community building Together we will make a difference in the lives of millions of patients (and change our nation’s clinical research system forever!) 8
  9. 9. Thank You!
  10. 10. Evaluation Engelberg Center for Health Care Reform The Brookings Institution • Washington, DC January 21-22, 2014
  11. 11. PCORnet Evaluation: Multiple Parts, Singular Goal Sarah Greene, MPH, PCORI Sarah Daugherty, PhD, MPH, PCORI Erin Holve, PhD, AcademyHealth Eric Schneider, MD, MSc, RAND
  12. 12. Why Are We Evaluating PCORnet? 12 PCORnet represents an unparalleled opportunity to undertake a real-time examination of key building blocks for a successful national research network This examination allows us to contribute to PCORI’s goal of building a durable infrastructure that meets the nation’s need for patient-centered CER As PCORnet partners, you are ideally positioned to help us understand how to optimize the network…while strengthening your own capabilities Collaboration Trust Engagement
  13. 13. Aligning Our PCORnet Evaluation with PCORI’s Strategic Plan 13
  14. 14. The 3 Components of PCORnet Evaluation Activities External Evaluation Program Monitoring & Self-Evaluation Evaluating Engagement Evaluation with Technical Assistance Evaluation, No Technical Assistance
  15. 15. Guiding Principles for Each Component 15 Evaluation approaches will be: Disciplined:  we will only collect data that we--or your network--can act on Judicious:  we will be mindful of how often we ask you for information Coordinated:  we will work together to ensure efficient processes Usable Information Respondent Burden
  16. 16. Anticipated Timeline for Assessments 16 Month 18Month 0 Ongoing Observation by RAND RAND Intvs Engt Survey Engt Survey Engt Survey PCORI AH PCORI AH PCORI AH PCORI AH PCORI AH
  17. 17. Engaging Patients in Infrastructure 17 Engage EvaluateEnhance
  18. 18. Internal Monitoring to Support Technical Assistance and PCORnet Objectives 18 Assess the productivity and effectiveness of PCORnet Identify opportunities for new collaborations, research studies, and partners Receive technical assistance from the CC, including policy development or guidance from PCORI Challenges & Requests for Support Products & Outcomes Participation & the Value of Participation Sustainability Milestone Reporting
  19. 19. External Evaluation 19 CC PCORnet Baseline PCORnet Future III. Capability Evaluation (@18 months) I. Process Evaluation II. Barrier/facilitator Evaluation CC
  20. 20. Discussion Questions 20 Engaging Patients What evidence do you wish you had with regard to patient engagement? How can this evidence support your decision-points about when, why, and whom to engage? Internal Monitoring Are there specific areas for lessons learned (or challenges) that the internal monitoring process should explore or track? Are there favorable approaches for asking about needed technical assistance? External Evaluation What do partners view as the most important facilitators of network participation? What do partners view as the main challenges to network participation?
  21. 21. Next Steps for Developing Core Research Capabilities Engelberg Center for Health Care Reform The Brookings Institution • Washington, DC January 21-22, 2014
  22. 22. Table Discussion Questions • What is the ONE thing you haven’t heard yet during our sessions that you think is important for the group to be considering? • What do you think are the TWO most important next steps your network and organizations must take moving forward?