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Panel: CUE in partnership- Lisa Simpson

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  • The challenge for our field is to innovate in response to these trends.
  • This framework for patient and consumer engagement sets forth expanded opportunities for involving patients and consumers in comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). This framework builds on work by the EDM Forum and the CPR Roundtable, and was just published in August.  Patients and consumers bring unique and critically important perspectives to the healthcare experience, and can be important partners in generating new evidence.  The proposed framework supports this philosophy and proposes opportunities for engagement in an expanded spectrum of activities, including both technical and data infrastructure development and the conduct of research.  This is a screen capture of an interactive diagram. Use your finger to navigate different parts of the framework and reveal underlying content.
  • Patients and consumers can engage in specific aspects of both technical and data infrastructure development and research through the following activities.
  • For partnerships, main points to consider: Who is the prime Who is the funding source
  • To provide a little more context about the Electronic Data Methods (EDM) Forum: Project funded by AHRQ through the recovery and reinvestment act of 2009 The Forum’s overarching goal is to advance the national dialogue on the use of electronic clinical data for the conduct of CER, quality improvement (QI), and clinical decision support by facilitating exchange and collaboration between the PROSPECT, DRN, and Enhanced Registry Projects. Specifically, we aim to Identify cross-cutting challenges, opportunities, and research priorities Provide opportunities for collaborative learning And ensure widespread promotion/dissemination of tools, techniques and findings Our strategies for translating and disseminating information include: Provide a hub of communication for ongoing dissemination of products. Creating a community that offers bi-directional information exchange and collaboration. Developing an accelerated process for peer-review and diffusion of information that is credible and timely.
  • However, there is general agreement that we need to find a way to rapidly disseminate “ street knowledge ” and the solution that has been identified through these same conversations is epublication. What do we mean by “ street knowledge ” ? This includes, processes, “ lab notes ” , best practices, challenges, and lessons learned generated through building infrastructure to conduct CER and PCOR using electronic clinical data. How much does “ impact ” matter if your; Research can be found (Google Scholar); Methods are transparent , and Can be unambiguously cited (H-index and ORCID)
  • Transcript

    • 1. Partnerships: What is Needed; What is possible Dr. Lisa Simpson President and CEO July 26, 2013
    • 2. Lisa Simpson I have documented that I have no relevant financial relationships with any commercial interests to disclose or Conflicts of Interest (COIs) to resolve.
    • 3. Outline  Setting the context  What is needed?  What is possible?
    • 4. AcademyHealth: Improving Health & Health Care AcademyHealth is a leading national organization serving the fields of health services and policy research and the professionals who produce and use this important work. Together with our members, we offer programs and services that support the development and use of rigorous, relevant and timely evidence to: 1. Increase the quality, accessibility and value of health care, 1. Reduce disparities, and 2. Improve health. A trusted broker of information, AcademyHealth brings stakeholders together to address the current and future needs of an evolving health system, inform health policy, and translate evidence into action. 4
    • 5. Leveraging >5,200 Diverse, Expert Members & Organizations 3 17 AcademyHealth Interest Groups 5
    • 6. Trends & Demands  Fiscal environment – Health care: need for value – Research: sequester!  Demand for more timely, relevant research while maximizing rigor  Expanding volume and variety of electronic data (e.g. from EHRs)  Demand for consumer, patient, and other stakeholder involvement in all phases 6
    • 7. HSR 1.0  Health services research is the multidisciplinary field of scientific investigation that studies how social factors, financing systems, organizational structures and processes, health technologies, and personal behaviors affect access to health care, the quality and cost of health care, and ultimately our health and well-being.  Its research domains are individuals, families, organizations, institutions, communities, and populations."
    • 8. HSR 2.0  What works?  For whom?  Under what circumstances?  At what cost?  And once we know what works,  How do we implement it?
    • 9. Outline  Setting the context  Opportunities for consumer and patient engagement
    • 10. Patient/Consumer Engagement  In care  In transformation – At the practice level – At the system level  In research  In research enterprise
    • 11. Patient/Consumer Engagement  Patient centered outcomes research  Community based participatory research  Policy driven/relevant research  Systems driven/relevant research
    • 12. A Framework for Consumer and Patient Engagement Source: Rein, A. Hamilton Lopez, M. Holve, E. Winkler, J. “A framework for patient and consumer engagement in Evidence Generation.” EDM Forum, AcademyHealth, August 2012.
    • 13. A Framework for Consumer and Patient Engagement (cont) Source: Rein, A. Hamilton Lopez, M. Holve, E. Winkler, J. “A framework for patient and consumer engagement in Evidence Generation.” EDM Forum, AcademyHealth, August 2012.
    • 14. What is Possible?  Partner with AcademyHealth –Leadership Roles –Funding Opportunities –Meetings –Fellowships/Scholarships –Advocacy
    • 15. What is Possible?  Partner with AcademyHealth –Leadership Roles • Advisory Boards & Committees • Program Committees • Consumer-Patient-Research Roundtable
    • 16. What is Possible?  Partner with AcademyHealth –Leadership roles –Funding Opportunities • AcademyHealth/CUE Joint PCORI Submission: Patient Consumer Research Academy (PCRA) submission
    • 17. What is Possible?  Partner with AcademyHealth –Leadership Roles –Funding Opportunities –Meetings • National Health Policy Conference • Annual Research Meeting • Annual Delivery System Meeting • Annual EDM Forum Stakeholder Symposium
    • 18. Conferences  Health Policy Orientation – October in Washington, DC – Limited to 50 participants  National Health Policy Conference (NHPC) – February 3-4, 2014 in Washington, DC – Nearly 700 attendees  Annual Research Meeting (ARM) – June 8-10, San Diego, CA – 2,400+ attendees anticipated
    • 19. What is Possible?  Partner with AcademyHealth –Leadership Roles –Funding Opportunities –Meetings –Fellowships/Scholarships • Innovators in Residence
    • 20. What is Possible?  Partner with AcademyHealth –Leadership Roles –Funding Opportunities –Meetings –Fellowships/Scholarships –Advocacy
    • 21. AcademyHealth Advocacy Interest Group  Facilitate interaction of individuals around specific topics around shared interests  Cultivate “grassroots” community: • Planning and facilitating annual “advocacy institute” at ARM • Hosting 1-2 advocacy webinars per day • Participating in annual “Hill Day  Steering Committee meeting in December  To join IG: – Go to your my.academyhealth.org page, click “Join/Edit Interest Group Membership”
    • 22. What is Possible?  Connect &/ partner with AcademyHealth  Connect &/ partner with AcademyHealth Members
    • 23. What is Possible?  Partner with AcademyHealth Members – Become an AcademyHealth member organization (affiliate) • Contact jane.brookstein@academyhealth.org or call 202-292-6754
    • 24. Research Partnership  http://my.academyhealth.org/Home/ – Connect with over 5000 researchers about areas of interest and research opportunities – Promote your skills, network – Search for funding opportunities
    • 25. EDM Forum  Electronic Data Methods (EDM) Forum Goals – Work with the community to identify cross-cutting • Challenges • Opportunities • Research priorities – Provide opportunities for collaborative learning – Ensure widespread promotion of tools, techniques, and findings Join the Discussion Sign up at edmforum@academyhealth.org
    • 26. In a Dynamic, Learning System; Dissemination Must Address the Journey, Not Just the Destination  HSR and medical journals focus on research results.  Not ideally designed for: – Process – Engaging non-research audiences – Discussion – Quick turnaround  Stakeholders increasingly perceive a need to rapidly disseminate “street knowledge”  eGEMS – “Electronic publications Generating Evidence and Methods to improve patient outcomes” – Papers, visualizations, and other media (audio/video) that provide guidance on the conduct of research and QI are invited – Submissions evaluated on usefulness; credibility; novelty – Facilitates discussion and collaboration
    • 27. What is Possible?  Connect &/ partner with AcademyHealth  Connect &/ partner with AcademyHealth Members
    • 28. Questions? Lisa Simpson, MB, BCh, MPH, FAAP President and CEO