Peer Review Workshop: Three Part Series The Patient Voice in Peer Review Welcome Session 2 PCORI Annual Meeting November 2, 2018 #PCORI2018
Purpose of this Workshop • Demonstrate the importance of patient reviewers’ input and the impact on the PCORI Final Research Report • Explain why patient peer review is a worthy endeavor • Address what it takes to be a patient reviewer • Answer your questions • Provide information about: • How to get involved in peer review • Resources for patient reviewers 2 • November 2, 2018
Patient Peer Reviewers include: • Patients • Patient Advocates • Unpaid Caregivers • Family Members 3 • November 2, 2018
Introduction: This is a Big Deal PCORI has a unique peer review process that involves patient reviewers Amy Price, PhD Marina Broitman, PhD Whitney Brower, MPH Patient Editor for Research and Evaluation Associate Director, Peer Review Program Associate, PCORI Public and Patient Engagement The British Medical Journal PCORI PCORI #PCORI2018
PCORI’s Obligations under its Authorizing Law • Conduct peer review of primary research to assess: • Scientific integrity Do the results support the Conclusions? • Adherence to PCORI’s Methodology Standards • To meet these obligations, PCORI requires a Final Research Report, which goes through peer review 5 • November 2, 2018
Getting the Word Out • Step 1: Peer review our primary research . Patients/other stakeholders join scientists as reviewers to help us assess how useful results will be in real life. • Step 2: Factor results of the peer review process into planning dissemination and implementation . Results’ summaries for professional and general audiences • Spanish/audio versions • Work with patients, family caregivers, health communications experts, • others to design and test content and formats Partner with stakeholders to tailor content and dissemination channels • Evaluate as we go • 6 • November 2, 2018
Types of PCORI Peer Reviewers Patients (Patient Advocates, Unpaid Caregivers) Stakeholders Associate Editors Subject Matter Experts Methodologists/ Statisticians 7 • November 2, 2018
Editorial Facts: Patient Peer Reviewers • Since October 2016, PCORI has sent out 395 invitations for review to 280 patient reviewers in our database • 37 patients reviewers have 183 Complete Patient completed more than 1 peer Peer Reviews by review 134 reviewers • Some people decline to review, some do not respond, and others have agreed but not yet completed a review 8 • November 2, 2018
Topics patients have reviewed include: • Engagement in healthcare • Cancer • Preventative care • Musculoskeletal system • Transgender care • Cardiac health diseases • Reproductive and urinary • Disparities in healthcare • Complementary and system diseases • Racial and ethnic minority alternative medicine • Decision support tools healthcare • Diabetes • Development of • Care coordination • Behavioral medicine educational materials • Kidney disease • Chronic pain • Pregnancy and childbirth • Respiratory disease • HIV • Mental health and • Blood disorders behavioral disorders 9 • November 2, 2018
Partners in Patient Peer Review The British Medical Journal was the first peer reviewed medical journal that included patients in their peer review process. PCORI is one of the first organizations in the United States to include patients in peer review. Amy Price, PhD Patient Editor for Research and Evaluation, The British Medical Journal 10 • November 2, 2018
Key Players of PCORI Peer Review: A Panel Discussion From Peer Review, to Editor’s Response, to the Final Research Report Principal Investigator: Hanan Aboumatar, MD, MPH Patient Peer Reviewers : Moderator: Johns Hopkins University Barbara Sheehan, MEd Ilya Ivlev, MD, PhD Jeffrey Oliver, MBA Oregon Health and Science University Associate Editor: Paul McClean Kelly Vander Ley, PhD Oregon Health and Science University
The PCORI Peer Review Process Final Peer Review Synthesis Research ( Patients , Letter Report Stakeholders, (Associate Methodologists, Research Expert, (Principal Editor) Statistician) Investigator) 12 • November 2, 2018
The Synthesis Letter • Associate Editors provide a synthesis of reviewer comments, as well as their own review of the report. • The synthesis letter includes a section specifically devoted to the patient perspective. • In addition, Primary Investigators are asked to address all reviewer comments in a response letter. 13 • November 2, 2018
Panel Discussion Questions for the panelists? 14 • November 2, 2018
Panelists • Patient Peer Reviewers : • Barbara Sheehan, MEd • Jeffrey Oliver, MBA • Paul McClean • Principal Investigator: • Hanan Aboumatar, MD, MPH, Johns Hopkins University • Associate Editor: • Kelly Vander Ley, PhD, Oregon Health and Science University 15 • November 2, 2018
Call to Action Let’s peer review! Rebekah Webb, MPA Project Coordinator, Editorial Office for PCORI Peer Review Oregon Health and Science University #PCORI2018
Impact of Patient Review on Final Report Example A: Prescription Pain Management (Opioid Therapy) • The patient reviewer commented that the study is framed in the context of overall opioid dose reduction, and suggested that alternative pain therapies could replace opioid treatment instead of presenting them as adjunct to pain control. • Also expressed was concern that the development of the intervention did not include stakeholders that do not share beliefs about the inherent risks of long-term opioid treatment. 17 • November 2, 2018
Impact of Patient Review on Final Report Example A: Prescription Pain Management (Opioid Therapy) → The authors improved the report with the following additions: • A more balanced background on the pros and cons of long-term opioid treatment • Clearer description of curriculum intent • Greater transparency of stakeholder positions and the underrepresentation of liberal perspectives on long-term opioid use 18 • November 2, 2018
Impact of Patient Review on the Final Report Example B: A Multidisciplinary Approach to Oncology • In the Discussion & Conclusion section, the patient reviewer suggested describing, from a patient’s point of view, what the difference is between the intervention (a multidisciplinary clinic) and a standard care clinic. 19 • November 2, 2018
Impact of Patient Review on the Final Report Example B: A Multidisciplinary Approach to Oncology → The authors added a description of the flow of patient appointments through a multidisciplinary clinic and also provided a description of the standard care appointment flow in their healthcare system. 20 • November 2, 2018
Impact of Patient Review on Final Report Example C: Clinical Effectiveness of Clinical-Community Childhood Obesity Interventions • The Reviewer thought the report needed more discussion of patient/stakeholder engagement--how they were identified and what they identified as primary concerns. 21 • November 2, 2018
Impact of Patient Review on Final Report Example C: Clinical Effectiveness of Clinical-Community Childhood Obesity Interventions → The authors added a two -page description of how stakeholders were identified, how the advisory boards were comprised, and what specific outcomes the advisory boards determined were most important. 22 • November 2, 2018
Impact of Patient Review on Final Report Example D: Family Navigator Services for Children Treated with Antipsychotic Medication • The reviewer asked what research aims were created based on information gathered through interviews and focus groups. 23 • November 2, 2018
Impact of Patient Review on Final Report Example D: Family Navigator Services for Children Treated with Antipsychotic Medication → In response, the authors added how they sought consumer and stakeholder input over a 6-month, in-depth process to create their research questions. 24 • November 2, 2018
Impact of Patient Review on Final Report Continued- Example D: Family Navigator Services for Children Treated with Antipsychotic Medication • The reviewer thought it was important to include examples of how Family Navigators could affect overall health of patients. 25 • November 2, 2018
Impact of Patient Review on Final Report Continued- Example D: Family Navigator Services for Children Treated with Antipsychotic Medication → In response, the authors included more case examples relating to the Family Navigator in their final report. 26 • November 2, 2018
Seeing like a patient In these examples, Research Teams did a tremendous amount of work with patients/caregivers during their research…. . . . But that was not communicated well in their research report until the patient reviewer asked for more details during the peer review process. Having patients involved in research during all phases of the research process makes a difference! 27 • November 2, 2018
Seeing like a patient Patient reviewers Help the reports be more patient- centered while still being scientifically rigorous Help identify jargon or assumptions that need clarification from the author(s) 28 • November 2, 2018
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