Standardization of EO Role and Integration Workflow Science & EO integration analysis engagement implementation Internal review identifying gaps leadership in cycle 3 2016, to standardize and discussion and including engagement opportunities for listening sessions updated assessments standardized on challenges & engagement plan input from an EO needs template
Stakeholder Engagement
Stakeholder Engagement Team Anna Swanson Jonathan Moore Emma Kopleff Program Associate Associate Director Program Officer Charmaine Boone Jourdan Davis Whitney McInvale Meghan Berman Sr. Admin Assistant Program Associate Program Associate Program Assistant
Background Roundtable forums and targeted convenings serve as a primary strategy for addressing key priorities for public and patient engagement: 1. Strengthen stakeholder relationships 2. Advance the science of engagement 3. Translate and share findings with the field 4. Promote dissemination and implementation 45
Engagement Strategies by Stakeholder Group Issue ‐ specific Individual Patients/Consumers Gatherings July Convening Conversations w/D&I Regional January Workshops Clinicians Collaboratives & Roundtable w/Science CME February PCORI Annual Payers June Meeting Roundtable Meeting Ongoing w/ Strategic Regional Purchasers & Others Trade Press & Outreach to Collaboratives Business Groups Others
Update on Recent Activity • January 25, 2018: Third roundtable for over forty physician specialty societies • February 13, 2018: Kick ‐ off for inaugural series of roundtable discussions for approximately 20 payer organizations Achieved objectives: • Shared overview of PCORI portfolio, emphasizing timely and impactful findings and interim stakeholder resources • Solicited feedback on stakeholder priorities, what they need from PCORI, and potential opportunities for ongoing collaboration and dialogue 47
Physician and Payer Forum Key Takeaways • Opportunities for improved communication – PCORI is a trusted source of information – Bidirectional and more frequent communication is desired to help reduce extraneous “noise” • Multipronged approaches are needed to translate research into readily available information for stakeholder decision making and practice – Interim “products” from PCORI (e.g., evidence maps, impact analyses), can support immediate stakeholder needs – Some physician groups are willing partners in the dissemination of impactful results – Decision makers and executives, not just CMOs, are an important audience within payer organizations 48
Upcoming Activity • May 24, 2018: Telehealth multistakeholder workshops • June 2018: Second in series of payer roundtable forums this year • July 2018: Consumer roundtable • January/February 2019: Transitions in care multistakeholder workshop • Continued regional forums as available 49
Current & Upcoming Special Initiatives:
Special Projects Work Rachel Mosbacher Program Officer, Special Projects
Current Projects Project Vendor Timeframe PCORI Staff Lead(s) Care Coordination Programs Insight Policy 11/15/17 – Josh Krantz Portfolio Analysis Research (IPR) 3/30/18 Disease Management or Case Insight Policy 11/15/17 – Josh Krantz Management Portfolio Analysis Research (IPR) 3/30/18 Research Portfolio Data Mining, American 10/26/17 – Kristin Carman Engagement Rubric Evaluation & Institutes for 1/30/20 Adaption Research (AIR) PCOR/CER Research Fundamentals American 10/26/17 – Erica Sarnes & and Training & Resources for Multi ‐ Institutes for 5/31/20 Kristin Carman stakeholder Research Teams Research (AIR) Meeting Facilitation and Support NORC/AHRQ 2/20/18 – Michelle Henton for Dissemination & 5/31/18 Implementation Workshop
Upcoming Projects • Four projects initiating in April: – Pipeline to Proposal Awards Program Analysis – Gene ‐ Therapy ‐ Based Interventions Review – Engagement Awards Interim & Final Progress Report Analysis – Engagement Awards Deliverable Cataloging • Three projects initiating in May/June: – Clinician Engagement Tool & Technical Support for Trials, Dissemination and Implementation of Evidence – Merit Review Mentor Training – Talking about Data: A Patient ‐ Centered Guide to Engaging Partners in Data Analysis and Interpretation • At least three projects initiating by September: – Engagement Tool Identification, Creation, Expansion & Cataloging Across the Research Portfolio – Developing and Applying Innovative Methods for Stakeholder Input into Research Topic Prioritization and Establishing Decisional Dilemmas – Convening on Evidence for Engagement • Ongoing projects, initiated as needed: – Literature Reviews on Portfolio Areas, Conditions, and Burden of Disease – Assessment of Economic Impact of PCORI ‐ Funded Evidence – Multi ‐ Stakeholder Capacity Building, Outreach and Input, and Dissemination ‐ Focused Workshops Found on PCORI website here: https://www.pcori.org/sites/default/files/PCORI- AOSEPP-IDIQ-Anticipated-Tasks-March-2018.pdf
54 Questions?
PPE Program Activities Aligned with Research Phases Engagement Engagement Stakeholder Strategic Advisory Ambassadors Merit Peer Speakers in Research Resource Engagement Projects Panels Program Review Review Bureau Projects Development Initiative Management Topic Identification & X X X X X X Research Prioritization Conduct of Study & Analysis of Results X X X X X X Dissemination & Implementation X X X X X X X of Study Findings 55
Program Timeline Task Timeline Welcome Inaugural Ambassadors – Patient Saturday, September 21, 2013 Engagement Advisory Panel Break Invite workshop attendees, advisory panelist, September 24 ‐ October 1, 2013 merit reviewers, and PCORI funded project partners to join the PCORI Ambassador Program We will resume the meeting at 10:45 AM ET Development and release of PCOR Science November 2013 Training Conduct six ‐ month program evaluation Spring 2014 First annual meeting Spring 2014 Release of additional PCOR Science Training Summer 2014 Conduct one ‐ year program evaluation Fall 2014
Peer Review: Innovations and Opportunities << Develop infrastructure for D&I >> Marina Broitman, PhD Senior Program Officer, Peer Review Office of the Chief Science Officer Advisory Panel on Patient Engagement Spring 2018 Meeting April 19, 2018
58 How PCORI Peer Review Works
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 • PCORI’s Board of Governors added that the peer ‐ review process should also: – “..address issues of relevance and usefulness for multiple audiences, including patients and caregivers” • To meet these obligations, PCORI requires a Final Research Report, which goes through external peer review 59
What Makes a Final Research Report? Draft final research report (DFRR) includes… Structured abstract Coverage of all study aims Description of patient & stakeholder engagement Detailed methods and results Study limitations Subpopulation considerations Checklist of adherence to PCORI’s Methodology Standards Copy of study protocol 60
How The Process Works
External Peer Reviewers Subject matter • Clinical scientists with expertise in a specific research area experts • Includes biostatisticians and other Methodologists methodologists Patients, caregivers, • Personal Knowledge and/or work in or patient advocates the report’s topic area • Clinicians, health systems, purchasers, Stakeholders payers, industry, policy makers
Elements of Reviewer Forms Subject Matter Expert Patient/Stakeholder Methodologist Compelling case for Compelling case for Compelling case for significance of the significance of the research significance of the research research Clear and complete Are study aims/research Detailed critique of methods methods description questions meaningful description Detailed description of Adequate description of Appropriateness of analytic interventions patient/stakeholder techniques engagement Clear and complete study Are interventions meaningful Clear and complete study results to patients/stakeholders results Do conclusions match the Does report inform decision ‐ Do conclusions match the results making results
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, authors are asked to address all reviewer comments in a disposition of comments table. 64
65 More About Patient Peer Reviewers
Patient Peer Reviewers in Our Reviewer Pool • As of April 2018, PCORI has invited 240 patient reviewers to review • Some people decline, some do not respond, and others have agreed but not yet completed a review 135 Complete Patient Peer Reviews from 115 Reviewers Slide courtesy of Rebekah Webb & Kira Lesley, OHSU 66
Peer Reviewer Database Community Patient Stakeholder Scientist Patient 251 Unpaid Caregiver 55 Patient Advocate 144 Clinician 65 Hospital/Health System 39 Purchaser 2 Payer 5 Industry 32 Policy Maker 12 Training Institution 28 Methodologist 258 Clinical Researcher 448
Main Recruitment Channels for Patient Peer Reviewers Slide courtesy of Rebekah Webb & Kira Lesley, OHSU 68
Where We are Actively Recruiting • • • Family Participants on PCORI panels Family Caregiver Alliance and advisory boards, also • • Friends Facing Our Risk of Cancer merit reviewers Empowered (FORCE) • Facebook • MedicineX • Transgender American • www.inspire.com • Department of Defense, Veterans Association (TAVA) • @pcori Congressionally Directed • National Breast Cancer • @OHSUnews Medical Research Programs, Coalition • Caregiver Action Network CDMRP • Accelerating Anticancer • • Komen Advocates in Science Consumers United for Agent Development and Evidence Based Healthcare • Cancer Research Institute Validation (CUE) Summit • • Native American American Lung Association • American Association of Rehabilitation Association • Institute for Patient and Nurse Practitioners • PCORI website Family ‐ Centered Care • OCHIN Slide courtesy of Rebekah Webb & Kira Lesley, OHSU 69
Personal Demographics of Patient Reviewers (n=115) Race (Self ‐ Identified) Gender (Self ‐ Identified) White 82 Black/African American 16 Women 88 American Indian/ Alaskan 1 Men 22 Native Left Blank 5 Native Hawaiian or Other 0 Pacific Islander Asian 5 Hispanic/ Latin X= 8 Other race 3 Did Not Respond 8 70
Health Conditions Represented by Our Patient Reviewer Database Slide courtesy of Rebekah Webb & Kira Lesley, OHSU 71
Healthcare Topics Represented by Our Patient Reviewer Database Slide courtesy of Rebekah Webb & Kira Lesley, OHSU 72
73 Preparing our Patient Peer Reviewers
74 Training for Patient & Stakeholder Reviewers
Training for Patient & Stakeholder Reviewers • Specific to patients or stakeholders • Self ‐ paced • Includes knowledge checks • Sample report to review • Practice with the reviewer form • Examples of “more helpful” and “less helpful” comments • Resources reviewers may access repeatedly 75
PEER REVIEW COMMUNICATIONS TOOLKIT PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
PEER REVIEW COMMUNICATIONS TOOLKIT Social media best practices Sample language for communications Sample shareable graphics Best practices for how to speak about peer review at different events Glossaries on social media & peer review
How Patient Reviewer Feedback has been Incorporated 78
How Patient Reviewer Comments Affect the Synthesis Letter Example: Patient Registries for Comparative Effectiveness – In the background section, the patient reviewer pointed out a disconnect between the stated outcomes in the abstract and the body. Further, the reviewer said that two of the aims stated throughout did not appear to be what was actually studied. → The Associate Editor incorporated a direct quote from the reviewer in their synthesis letter and asked the authors to clearly state the research questions. Slide courtesy of Kelly Vander Ley, OHSU 79
How Patient Reviewer Comments Affect the Synthesis Letter Example: Self Care Management of Cancer Symptoms – Commenting on the intervention, the patient reviewer said the report needed to take into account the reduced learning capacity of patients undergoing moderate to advanced cancer treatment. → The Associate Editor directed the author to note this comment, saying: “[The reviewer] also raises the salient point that [they were] unable to retain information while actively receiving treatment and being overwhelmed with numerous bio ‐ psycho ‐ social issues.” Slide courtesy of Kelly Vander Ley, OHSU 80
Impact of Patient Review on the Final Report Example: Skills Latina Mothers use to get healthcare for their children – The Reviewer noted that the background section lacked a definition of “mental health needs.” → In response, the authors amended the background sec � on to explain this term could mean a variety of things, including “perceived need, screened and diagnosed conditions” Slide courtesy of Kelly Vander Ley, OHSU 81
Impact of Patient Review on Final Report 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. → In response, the authors included more case examples relating to the Family Navigator in their final report. Slide courtesy of Kelly Vander Ley, OHSU 82
Seeing Like a Patient Patient reviewers Shift the focus of the reports toward information that patients care about, making the final reports more patient ‐ centered. Help the reports become more accessible by using language that is more understandable and meaningful to patients. Slide courtesy of Kelly Vander Ley, OHSU 83
Thank You! Peer Review Website: https://www.pcori.org/research-results/peer-review-our-studies Peer Reviewer Application: http://www.sciencesupport.org/PCORIpeer/ 84
Literature Review of Engagement in PCORI-Funded CER Laura Forsythe, PhD, MPH Director, Evaluation & Analysis Denese Neu, PhD, MS Engagement Officer Advisory Panel on Patient Engagement Spring 2018 Meeting April 19, 2018
Agenda for Today • Welcome, Introduction • Targeted Literature Review on the Contributions of Engagement in PCORI ‐ Funded CER o Background & rationale o Proposed approach o Discussion 86
Project Goals • Conduct a review of the peer ‐ reviewed literature associated with PCORI ‐ funded CER to: o Identify and summarize the contributions of engagement o Compare the contributions of engagement identified in the literature against PCORI’s evaluation framework o Identify case examples of the contributions of engagement in clinical CER 87
What Does Engagement in Research Lead to? Patient-Centered CER GOALS IMPACT Engagement Studies that Matter to Patients Useful Health in Research • Research questions, process, Information Decisions design, & outcomes • Who • Study participant experiences • What Use of Health • Recruitment & retention • When Information Care • Study quality • How • To whom and how results are • Influence disseminated • Principles Influence Health • Trust in information Others Outcomes • Understanding of information Predictors Intermediate Outcomes Long-term Outcomes 88
Reviews Reveal Evidence Gaps for Impact of Engagement, Best Practices, and Measurement Tools 89
Overarching Question of the Literature Review What are the contributions of engagement in PCORI ‐ Funded CER? 90
What We Seek to Know 1. Contributions of engagement in PCORI ‐ funded clinical CER studies to the: a) design & conduct of a clinical CER study Primary b) influence on institutions, investigators, & partners to be more patient ‐ centered c) usefulness & uptake of clinical CER findings 2. Approaches to engagement that PCORI CER study teams use to achieve those contributions 3. Context (e.g., study design, PFA type, etc.) in which the Secondary contributions of engagement were achieved 4. How PCORI CER study teams assess the contributions of engagement 91
Learn How Study Teams are Build the Evidence for Writing About Engagement Engagement Why do this literature review? Communicate Value of Facilitate Future Engagement Engagement 92
Who is doing this project? Advisory Panel Evaluation PCORI Staff: Key Advisors on Patient Strategy Communications, ADVISING from PCORI Engagement Work Engagement, Leadership (PEAP) Group Science Use Design Conduct Results Core Team Evaluation & Analysis, Medical Librarian, Science, Engagement Officers, Board of Governors, Methodology Committee Subcommittee of PEAP: Advisory Committee for Literature Review 93
PEAP Advisory Committee Members • John Chernesky • Emily Creek • Libby Hoy • Anjum Khurshid • Jane Perlmutter • Phil Posner • Ting Pun • Brendaly Rodriguez • Beverly Rogers • Tom Scheid • Ronnie Todaro 94
Plans for Collaboration Four Teleconferences 1. Discuss and revise the research questions, methods, and analysis plans 2. Provide feedback on patterns in important information from the articles 3. Interpret the results of the literature review and determine what they mean for PCORI and those interested in PCOR 4. Identify and contribute to opportunities to share the findings 95
How will we pick the papers for this project? • Peer ‐ reviewed publications • Related to any PCORI project funded through the four CER national priorities (AD, APDTO, CDR, IHS) • Must include information about the contributions of engagement – Not just descriptions of the approaches and/or the challenges of engagement and how they were overcome 96
Example Engagement Approach Engagement Contribution “At yearly in ‐ person meetings and “As a result, the intervention was monthly conference calls, community reduced from 14 sessions to 8, partners with direct experience as frequency was increased to twice a caregivers or providing services to month, and participant eligibility was Latino caregivers and care recipients, broadened to include any Latina breast participated in brainstorming about cancer survivors between the ages of intervention components. […] During 18–80, regardless of the time since study planning, team discussions diagnosis.” addressed practical considerations of the intervention’s frequency, length, and participant eligibility. “ Quotations From: Rush CL, Darling M, Elliott MG, et al. Engaging Latina Cancer Survivors, their Caregivers, and Community Partners in a Randomized Controlled Trial: Nueva Vida Intervention. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2015;24(5):1107-1118. doi:10.1007/s11136-014-0847-9. 97
Approach to Conducting the Literature Review Identify Search for Important Analyze the Use the Engagement PCORI CER Findings Findings Papers Information in Papers Determine Screen Papers Level of Detail for Interpret the & Rigor of Contributions Findings Contribution of Engagement Measure DRAFT ‐ do not share 98
Looking Forward PCORI projects with All PCORI publications reporting on projects will contribution of have Final engagement Research Reports Entire landscape publishing the contribution of engagement in research 99
Engaging Our PEAP Discussion Questions: • What can we capture in addition to answering the immediate question? • What can we mark/time stamp to inform future comparative lit reviews? • What new questions should we consider answering? 100
Recommend
More recommend
