PCORI Mission and Mandate to Fund CER


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Slide presentation from the September 11, 2013 Rare Disease Roundtable.

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PCORI Mission and Mandate to Fund CER

  1. 1. PCORI’s Mission and Mandate to Fund CER Joe Selby, MD, MPH, Executive Director, PCORI Rare Diseases Roundtable September 11, 2013
  2. 2. Housekeeping PCORI is committed to transparency  All sessions are being broadcast live via webinar Webinar comments  No public comment sessions today  If opportunity arises, we will add your comments to the discussion Please be mindful of your microphone  Remember to turn off when finished speaking Break Schedule  10:45 am and noon Wi-Fi is available in the room today
  3. 3. “The purpose of the Institute is to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which through research and evidence synthesis that considers variations in patient subpopulations and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of medical treatments, services.” Source: Affordable Care Act. Subtitle D—Patient-Centered Outcomes Research Institute PUBLIC LAW 111–148—MAR. 23, 2010 3
  4. 4. Our Mission 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. 4Pictured: PCORI Board of Governors
  5. 5. Our Work Answers Patients’ Questions Given my personal characteristics, conditions and preferences… “What should I expect will happen to me?” “What are my options and what are the potential benefits and harms of those options?” “What can I do to improve the outcomes that are most important to me?” “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and healthcare?” 5
  6. 6. “Research shall be designed, as appropriate, to take into account the potential for differences in the effectiveness of health care treatments, services, and items as used with various subpopulations, such as racial and ethnic minorities, women, age, and groups of individuals with different comorbidities, genetic and molecular sub-types, or quality of life preferences and include members of such subpopulations as subjects in the research as feasible and appropriate.” Source: Affordable Care Act. Subtitle D—Patient-Centered Outcomes Research Institute PUBLIC LAW 111–148—MAR. 23, 2010 6
  7. 7. 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 7
  8. 8. We Use Engagement as a Path to Rigorous Research 8
  9. 9. How We Promote Participation in Research Engagement Awards Matching Challenge Pilot Projects Pilot Projects: address a broad range of questions about methods for engaging patients in various aspects of the research and dissemination process. Matching Challenge: two challenge winners created innovative ways to connect patients and researchers as partners in research. Engagement Awards: Pipeline to Proposal Awards will build a national community of patients and stakeholders who have the expertise and passion to participate in PCORI research, and create partnerships within that community that lead to high-quality research proposals. 9
  10. 10. Data Infrastructure for Patient-Centered Outcomes Research Ideal Data Infrastructure for PCOR Covers large, diverse, defined populations from usual care settings Allows for complete capture of longitudinal data Capacity for collecting patient reported outcomes Active patient and clinician engagement in governance of data use Is efficient in terms of costs for data acquisition, storage, analysis Linkages to health systems for rapid dissemination of findings Capable of randomization— at individual and cluster levels 10
  11. 11. National Patient-Centered Clinical Research Network Clinical Data Research Networks (CDRNs), which are system-based networks (such as hospital systems) that have the potential to become an ideal electronic network, without structural impediments. Patient-Powered Research Networks (PPRNs), which are groups of patients interested in forming a research network and in participating in research. A Coordinating Center which will provide technical and logistical assistance under the direction of the Steering Committee and PCORI Staff. 11
  12. 12. 12 National Patient-Centered Clinical Research Network: Our Vision Steering Committee • Awardees • PCORI • AHRQ, NIH, FDA, ONC, CMS, VA Scientific Advisory Board Special Expert Group
  13. 13. Potential Participants  Patient Organizations  Practice Based Research Networks  Medical Groups  Medical Centers  Health Plans  Integrated Delivery Systems  Disease Registries  Centers for Medicare and Medicaid Services  State and Local Health Agencies 13