P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE     Setting PCORI’s Priorities – How the     Patient-Centered...
PCORI Purpose: Defining Legislation P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE                          ...
PCORI Mission P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE PCORI MISSION STATEMENT •      The Patient-Cent...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEWhy PCORI?•     Patients’ individual needs, values and concern...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEA Board Broadly Representing the Health Care Community        ...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE    What is patient-centered outcomes research?*Complements tr...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEMaking Outcomes Research Patient-Centered                     ...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEPCORI seeks to do its work by:• Establishing national research...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEPCORI’s Path from Priorities to ResearchPatients Can Use      ...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTECriteria for Research Outlined by Law                         ...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEEstablishing PCORI’s First National Prioritiesfor Research and...
National Priorities for Research   P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEBetter Information         ...
National Priorities for Research   P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEProducing and delivering in...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEA rigorous methodological basis for PCOR  •       To do CER an...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEA commitment to public engagementFormal 53-day Public Comment ...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEPatient and Caregiver Focus Groups  Baltimore, MD (Nov. 9)    ...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEReceiving Public Feedback on the NationalPriorities and Resear...
P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTENext Steps   March-April 2012                                 ...
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JAMA Briefing on Comparative Effectiveness Research

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The Patient-Centered Outcomes Research Institute (PCORI) sponsored a webcast to unveil the April 18 issue of the Journal of the American Medical Association (JAMA). The issue focuses on comparative effectiveness research and features two articles authored by PCORI.

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JAMA Briefing on Comparative Effectiveness Research

  1. 1. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE Setting PCORI’s Priorities – How the Patient-Centered Outcomes Research Institute Plans to Make a Difference Anne C. Beal, MD, MPH COO, Patient-Centered Outcomes Research Institute (PCORI) JAMA Media Briefing National Press Club, Washington, DC April 17, 2012
  2. 2. PCORI Purpose: Defining Legislation P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE “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 diseases, disorders, and other health Purpose conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed 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. PUBLIC LAW 111–148—MAR. 23, 2010.
  3. 3. PCORI Mission P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE PCORI MISSION STATEMENT • 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.
  4. 4. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEWhy PCORI?• Patients’ individual needs, values and concerns have not been an “outcome measure” in traditional research.• Patients who face a range of treatment options, especially for serious conditions, want clinicians to help them figure out what different choices mean for them or people like them.• Clinicians often lack the high-quality evidence they could use to advise patients making complex clinical decisions.• Even the best traditional clinical effectiveness research has not had this “patient-centric” focus. 4
  5. 5. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEA Board Broadly Representing the Health Care Community • Patients • Caregivers • Physicians, nurses and clinicians • Hospitals and health systems • Health plans • Health services researchers • State and federal health officials • Pharmaceutical, device, and diagnostic manufacturers • Private payers • Employers 4
  6. 6. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE What is patient-centered outcomes research?*Complements traditional CER; answers patient-centered questions like:• “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?” *From PCOR definition adopted by PCORI Board of Governors, March 5, 2012
  7. 7. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEMaking Outcomes Research Patient-Centered Patient-DrivenPatient Engagement Research Dissemination Understanding Aligning research questions Providing patients and the choices and methods with providers with information patients face patient needs for better decisions 6
  8. 8. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEPCORI seeks to do its work by:• Establishing national research priorities• Establishing and carrying out a research agenda• Developing and updating methodological standards• Disseminating research findings• Engaging patients, caregivers, clinicians and other stakeholders as its work evolves 7
  9. 9. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEPCORI’s Path from Priorities to ResearchPatients Can Use Future priorities and agendas will be informed by the development process, ongoing stakeholder engagement, and PCORI’s research results. 8
  10. 10. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTECriteria for Research Outlined by Law Addresses Impact on Health of Current Gaps in Individuals and Patient-Centeredness Knowledge/ Populations Variation in CareImprovability through Impact on Health Care Rigorous Research Research System Performance Methods Inclusiveness of Potential to Influence Efficient Use ofDifferent Populations Decision-Making Research Resources 9
  11. 11. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEEstablishing PCORI’s First National Prioritiesfor Research and Initial Research Agenda First primary 9 5 Corresponding Public input Priorities and fundingcriteria outlined draft priorities received and agenda revised agenda drafted announcements by law proposed evaluated and approved issued Aug-Dec 2011 Jan-Apr 2012 May 2012 10
  12. 12. National Priorities for Research P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEBetter Information Better Decisions 1. Comparing Better Decisions Preventive, Diagnostic and ? ? Better Outcomes Treatment Options
  13. 13. National Priorities for Research P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEProducing and delivering information to support better healthcare decisions by individuals 2. Improving Health Care Systems 1. Comparing Better Decisions Preventive, 3. Communication/ Dissemination Diagnostic and Research Better OutcomesTreatment Options 4. Addressing Disparities 5. Accelerating PCOR and Methodological Research - Data - Training - Methods
  14. 14. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEA rigorous methodological basis for PCOR • To do CER and PCOR properly, methods matter. • PCORI’s Methodology Committee is established by statute. • Committee is charged with developing and periodically updating methodological standards for CER/PCOR. • Committee is required to deliver first report to PCORI’s Board in early May. – prioritizing research questions – using appropriate study designs – incorporating patient perspectives throughout the research continuum – fostering efficient dissemination and implementation of results.
  15. 15. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEA commitment to public engagementFormal 53-day Public Comment Period• Nearly 500 comments received through website, e-mail or postal mail• All comments will be posted at pcori.orgAdditional Forums• National Patient and Stakeholder Dialogue• Patient, caregiver and clinician focus groups• Individual meetings with diverse mix of stakeholders 14
  16. 16. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEPatient and Caregiver Focus Groups Baltimore, MD (Nov. 9) Atlanta, GA (Nov. 21) • Patients with Arthritis • Patients with Diabetes • Parents of children with Pediatric • Caregivers to Alzheimer’s patients Asthma (caregivers) • Patients with Chronic Pain • Patients with mix of chronic • Insured and uninsured conditions • Age: 21-75+ • Insured and uninsured • Age: 21-69 Columbus, OH (Dec. 7) Phoenix, AZ (Dec. 8) • Parents of children with ADD/ADHD • Patients with Respiratory Disease (caregivers) (chronic bronchitis, emphysema) • Patients with Mental Health • Hispanic patients with mix of conditions chronic conditions • Patients who survived Cancer • Patients with Heart Disease • Insured and uninsured • Insured and uninsured15 • Age: 30-70+ • Age: 21-69
  17. 17. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTEReceiving Public Feedback on the NationalPriorities and Research Agenda• Clinician Focus Groups o Clinician focus groups took place in cities across the US o Philadelphia o Birmingham o California o Chicago o Four groups of physicians and four groups of nurses o Behavioral Health Professionals o Physician Assistants16
  18. 18. P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTENext Steps March-April 2012 • Analysis of public comment received on Priorities and Agenda April 2012 • Adoption of first National Priorities for Research and Research Agenda May 2012 • First Methodology Report posted for public comment May 2012 • Broad Funding Announcements Issued June 2012 • Patient and Stakeholder Recruitment and Training for Research Review July 2012 • Broad Funding Applications Due Summer 2012 • Advisory Groups Formed to Advance Agenda Specificity August 2012 • Targeted Funding Announcements Issued December 2012 • Broad Funding Awards Announced 17

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