Frank cue 08_june2012v4

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Frank cue 08_june2012v4

  1. 1. Patient-Centered Outcomes Research InstitutePCORI Research on EngagementLori Frank, PhDDirector of Engagement ResearchJune 8, 2012
  2. 2. Patient-Centered Outcomes Research P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE Patient-Centered Outcomes Research (PCOR) Helps people and their caregivers communicate and make informed health care decisions, allowing their voices to be heard in assessing the value of health care options. This research answers patient-centered questions such as: Expectations Options Outcomes Decisions • “Given my • “What are my • “What can I do • “How can personal options and what to improve the clinicians and the characteristics, are the potential outcomes that care delivery conditions and benefits and are most systems they preferences, harms of those important to work in help me what should I options?” me?” make the best expect will decisions about happen to me?” my health and healthcare?”2
  3. 3. The Mission P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE  To help people make informed health care decisions and improve health care delivery and outcomes by: PCORI ‒ Producing and promoting high integrity, evidence- based information that comes from research guided by patients, caregivers and the broader health care community  To define methodological best practices  To identify gaps in methods knowledge Methodology Committee  To prioritize methodological areas of focus so that PCORI can accomplish its PCOR agenda.3
  4. 4. Methodology Report P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE  The Methodology Committee, in accordance with PCORI’s establishing legislation, submitted to the Board of Governors on May 10, 2012, the first draft PCORI Methodology Report  The draft report was accepted by the PCORI Board of Governors on May 21, 2012  A public comment period on the draft report will begin in July4 Source: http://www.pcori.org/what-we-do/methodology/
  5. 5. Methodology Committee Awarded Contracts Awarded RFP Topic/TypeOM ES R ES EA R CH IN S T ITUTE P A T IENT -CENTERED O U T C Contractor Methods for Topic Generation 1. Hayes Inc. Setting Value of Information Analysis 2. NORC at The University of Chicago Priorities in Value of Information Analysis 3. Duke University, Evidence-Based Practice Center Research Peer Review 4. University of Wisconsin, Medical College (White Paper) Evidence for 5. Oregon Health & Science University, The Center for Stakeholder Interview Eliciting the Evidence-Based Policy Patient’s Literature Review 6. Mayo Clinic, Knowledge and Evaluation Research Unit Perspective in 7. University of Maryland School of Pharmacy, Supplement to Stakeholder Interviews PCOR Pharmaceutical Health Services Research Department Standards in the Prevention and Handling of Missing Data in Observational and Experimental Patient Centered Outcomes 8. Johns Hopkins Bloomberg School of Public Health Research. Standards in the Design and Selection of Patient-Reported 9. Northwestern University/UNC Chapel Hill Outcomes Measures (PROMs) for Use in Patient Centered 10. Oxford Outcomes Outcomes Research. Review of Standards in the Design, Conduct, and Evaluation of Adaptive Guidance 11. Berry Consultants Randomized Clinical Trials. Documents for Standards in the Design, Conduct, and Evaluation of Research Selected Evaluating Diagnostic Testing Strategies for Patient Centered 12. Brown University Methods in Outcomes Research. PCOR Standards for Causal Inference Methods in Analyses of Data from 13. Division of Pharmacoepidemiology and Observational and Experimental Studies in Patient Centered Pharmacoeconomics, Department of Medicine, Brigham Outcomes Research. and Womens Hospital and Harvard Medical School Standards in the Conduct of Registry Studies for Patient Centered 14. Outcome Sciences, Inc. (A Quintiles Company) Outcomes Research. Networks or Distributed Data Networks in Patient Centered 15. University of California and San Diego Outcomes Research.5
  6. 6. Standards for Patient-Centeredness and Engagement P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE 3.1.2 Identify Specific Populations and Health Decision(s) Affected by the Research 3.1.5 Measure Outcomes that People in the Population of Interest Notice and Care About 4.1.1 Engage Patient Informants, Persons Representative of the Population of Interest, in All Phases of Patient-centered Outcomes Research (PCOR) 4.1.2 Identify, Select, Recruit, and Retain Study Participants Representative of the Spectrum of the Population of Interest Facing the Health Decision of Interest and Ensure that Data Are Collected Thoroughly and Systematically from All Study Participants 4.1.3 Use Patient-Reported Outcomes When Patients or People at Risk of a Condition Are the Best Source of Information 4.1.4 Develop and Implement a Dissemination Assessment to Achieve Broad Awareness of Study Results6
  7. 7. PCORI Research: Eliciting the Patient Perspective in PCOR A Meta Narrative Systematic Review P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE 09 Potentially relevant references 5551 Potentially relevant Environmental Scan identified by manual search / references identified by Expert contact electronic search Abstract screening 09 Studies included at this level 199 Studies at this level Full text screening Data extraction Duplicate elimination 194 Studies included in the 53 Included Documents Systematic review 11 Systematic 7 Randomized 49 Non Systematic 103 Qualitative 8 Single Cohort 7 Case report 9 Cross Sectional Review Review Controlled Trials7 Source: Hassan Murad et al. (2012). Eliciting Patient Perspective in Patient-Centered Outcomes Research: A Meta Narrative Systematic Review. Rochester, MN: Mayo Clinic.
  8. 8. In Which Therapeutic and Topic Areas Was Engagement Studied? P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE Study settings Physical disabilities HIV Mental and neurological health Neoplastic diseases Social topics Chronic diseases (i.e. TB, DM, etc.) General health research 0 5 10 15 20 25 30 35 40 45 N8 Source: Hassan Murad et al. (2012). Eliciting Patient Perspective in Patient-Centered Outcomes Research: A Meta Narrative Systematic Review. Rochester, MN: Mayo Clinic.
  9. 9. What Study Designs Were Used to Study Engagement? P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE Included Study Design N 30 25 20 15 10 5 0 Agenda Setting Study Design & Study Recruitment Data Collection Data Analysis Dissemination Implementation Evaluation Procedures Preparation Execution Translation Systematic Review Randomized Controlled Trail Qualitative Cross Sectional Case Report Literature Review Commentary9 Source: Hassan Murad et al. (2012). Eliciting Patient Perspective in Patient-Centered Outcomes Research: A Meta Narrative Systematic Review. Rochester, MN: Mayo Clinic.
  10. 10. How Was Engagement Achieved? P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE Used Methods to obtain informants voice N 18 16 14 12 10 8 6 4 2 0 Agenda Setting Study Design & Study Data Collection Data Analysis Dissemination Implementation Evaluation Procedures Recruitment Preparation Execution Translation Focus Group Interview Survey Deliberation/Organizational participation10 Source: Hassan Murad et al. (2012). Eliciting Patient Perspective in Patient-Centered Outcomes Research: A Meta Narrative Systematic Review. Rochester, MN: Mayo Clinic.
  11. 11. Conclusions From Reviewing the Literature P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE  Methods not well described in most studies  Environmental scan: ‒ Disease specific social networks ‒ Networks designated for patient engagement (Europe/Canada)  We did not find comparative studies to determine the relative efficacy of a particular method of identifying patient representatives11 Source: Hassan Murad et al. (2012). Eliciting Patient Perspective in Patient-Centered Outcomes Research: A Meta Narrative Systematic Review. Rochester, MN: Mayo Clinic.
  12. 12. Next Step: Speaking to People About Engagement PCORI Expert Interviews Project P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE  299 experts identified ‒ Existing professional networks ‒ Environmental scan ‒ Snowball technique  128 contacted  87 interviews completed ‒ Phone ‒ 30-60 minutes ‒ December 12, 2011 – February 15, 201212 Source: Curtis, P, Slaughter-Mason, S, Thielke, A, Gordon, C, Pettinari, C, Ryan, K, Church, B, King, V(2012). PCORI Expert Interviews Project: Final report. Portland, OR: Center for Evidence-based Policy, Oregon Health & Science University.
  13. 13. PCORI Expert Interviews Project: Facilitated Discussions P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE13 Source: Curtis, P, Slaughter-Mason, S, Thielke, A, Gordon, C, Pettinari, C, Ryan, K, Church, B, King, V(2012). PCORI Expert Interviews Project: Final report. Portland, OR: Center for Evidence-based Policy, Oregon Health & Science University.
  14. 14. PCORI Expert Interviews Project: Key Themes P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE  Respect  Communication  Dedicated Resources14 Source: Curtis, P, Slaughter-Mason, S, Thielke, A, Gordon, C, Pettinari, C, Ryan, K, Church, B, King, V(2012). PCORI Expert Interviews Project: Final report. Portland, OR: Center for Evidence-based Policy, Oregon Health & Science University.
  15. 15. Using Patient-Reported Outcomes P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE  Develop “Ideal” or “Best Practices” standards... ‒ from conceptualization ‒ to development ‒ through evaluating psychometric properties ‒ in multiple diverse populations.  Differentiate research use vs. healthcare use of PROs15 Source: Butt, Z and Reeve, B (2012). Enhancing the Patient’s Voice: Standards in the Design and Selection of Patient-Reported Outcomes Measures (PROMs) for Use in Patient-Centered Outcomes Research: Methodology Committee Report. Evanston, IL: Northwestern University.
  16. 16. Emerging Models of Engagement P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE Informant Selection Re-Assessment & Building Reciprocal Feedback Partnerships Co-learning Researchers Informants Source: 1Curtis, P, Slaughter-Mason, S, Thielke, A, Gordon, C, Pettinari, C, Ryan, K, Church, B, King, V(2012). PCORI Expert Interviews Project: Final report. Portland, OR: Center for Evidence-based Policy, Oregon Health & Science University. 2Hassan Murad et al. (2012). Eliciting Patient Perspective in Patient-16 Centered Outcomes Research: A Meta Narrative Systematic Review. Rochester, MN: Mayo Clinic.
  17. 17. Engagement Principles: From Thought to Action P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE Ideal Practice: Engage “Early and Often”  Trust Pre- Training: Engagement Patient and with Target  Transparency Participant Population  Co-learning Require Longitudinal Elements for Relationship Proper  Reciprocal Building/ Indexing – Maintenance Permit Evaluation relationships Evaluation of  Partnerships Comprehension over Time  Honesty17 Source: Hassan Murad et al. (2012). Eliciting Patient Perspective in Patient-Centered Outcomes Research: A Meta Narrative Systematic Review. Rochester, MN: Mayo Clinic.
  18. 18. Patient-Centered Research Objectives P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE Outcomes Stakeholder Input Outcomes are meaningful and Study design, outcomes and important to patients comparators have been informed by patients • And others: family, clinicians, policymakers, - ? Engagement What Works for Whom…? Engage patients iteratively Assess disease course and treatment effect based on biomarker and • From topic generation to research “psychomarker” data prioritization through dissemination18
  19. 19. Patient-Centered Perspective P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE • Who determined? – The research questions – For database studies, the database to use – The variables to examine: outcomes, comparators, covariates – The analytic methods? • Who is on the research team? – Patients or patient advocates? – Other stakeholders? • What will the research team do with the information? – How will results apply to health decisions? • Is there a plan for interaction between researchers and the community?19
  20. 20. Connect with PCORI P A T IENT -CENTERED O U T C OM ES R ES EA R CH IN S T ITUTE  Visit us at www.pcori.org  Subscribe to PCORI updates at www.pcori.org/subscribe  Follow @PCORI on Twitter  Watch our YouTube channel – PCORINews20

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