PCORI Evaluation Group. Tenth Meeting November 5, 2014
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1 PCORI Evaluation Group Tenth Meeting November 5, 2014
2 Agenda for Today Recap from 10/15 meeting: Status updates Communicating about PCORI evaluation work Focus on topic capture and research prioritization Process to date Evaluation planning Key take-away points PEG Meeting, November 5,
3 October 2014: - Communicating PCORI s Evaluation Activities - Lessons learned for evaluation: Pronovost & Jha, 2014 (NEJM) Dec 2013 In-person Kick-off: - Brainstorming and prioritizing evaluation questions - Metrics for strategic goals Jan 2014: - Measuring engagement and its impact in PCORI projects July 2014: - Need for an external evaluation for overall impact of PCORI? - Methods for evaluating merit review June 2014: - PCORI Dashboard: metrics & visuals May 2014: - Overview of current data collection plans - CER survey: Researchers HISTORY OF THE PCORI EVALUATION GROUP April 2014: - Measuring goal #1: useful information Feb 2014: - Metrics for strategic goals - Evaluation Framework and prioritization of evaluation questions March 2014: - Measuring engagement and its impact in PCORI projects - CER Surveys: researchers, patients, & clinicians PEG Meeting, November 5,
4 PCORI Evaluation Goals Steering PCORI: Determine progress against 3 PCORI goals Provide the public a framework for evaluating PCORI progress and provide progress updates Meet GAO requests PEG Meeting, November 5,
5 Status update: Measuring Progress on PCORI Strategic Goals Goal 1: Useful information Applying usefulness criteria to the CER portfolio Goal 2: Uptake of information Tracking early indicators of dissemination Goal 3: Influence research Building repository of examples of PCORI s influence Future activities: Track additional metrics as study findings are available and implemented PEG Meeting, November 5,
6 Status update: PCORI Evaluation Framework Evaluation questions, metrics, and data sources outlined and prioritized to guide evaluation projects What is the impact of PCORI s approach to Topic Generation and Research Prioritization? discuss at this meeting What is the Impact of PCORI s Approach to Communication, Dissemination, and Implementation of information from funded research? to discuss after release of PCORI s D&I framework (Dec 2014) PEG Meeting, November 5,
7 Status Update: PCORI Dashboard Used for quarterly reporting to PCORI Board of Governors Improvements in data to populate the dashboard and the visual presentation Future activities: Update dashboard as more advanced metrics of PCORI strategic goals are available PEG Meeting, November 5,
8 PCORI Data Collection and Evaluation Impact of PCORI Portfolio Merit Review Best Practices in Research Engagement PCORI Events Patient and Other Stakeholder Knowledge, Attitudes and Behavior PEG Meeting, November 5,
9 Agenda for Today Recap from 10/15 meeting: Status updates Communicating about PCORI evaluation work Focus on topic capture and research prioritization Process to date Evaluation planning PEG Meeting, November 5,
10 Topic Capture and Research Prioritization Evaluation Questions 1. What is the impact of PCORI s approach to Topic Generation, Prioritization, and Selection (inclusion of patients and other stakeholders, methods for ranking and selection) on: perspectives incorporated into topic selection process, the topics selected for funding, and PCORI projects filling identified research gaps? 2. Compared to broad funding announcements, what is the effect of targeted funding announcements on the impact of information? 3. Compared to funding opportunities developed with input from scientists only, what is the effect of funding opportunities developed based on multi-stakeholder input on the impact of information? PEG Meeting, November 5,
11 Model: Topic Capture and Research Prioritization Evaluation Questions PEG Meeting, November 5,
12 Evaluation questions: 1 of 3 1. What is the impact of PCORI s approach to Topic Generation, Prioritization, and Selection on: perspectives incorporated into topic selection process: Describe perspectives captured through public topic solicitation and engagement outreach Tracking of progress of topics through prioritization by stakeholder category Comparison of submissions against funded portfolio, by stakeholder category PEG Meeting, November 5,
13 Hearing from stakeholders PCORI Engagement Workshop November 2012 Patients don t have research questions, they have questions There are research questions others have identified that PCORI should address Provide tracking of progress of topics through prioritization PEG Meeting, November 5,
14 The Advisory Panel meeting gave me the opportunity to provide input on PCORI's research topics 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree Apr-13 Jan-14 14
15 The research prioritization process allowed me to systematically rank research topics 50.00% 45.00% 40.00% 35.00% 30.00% 25.00% 20.00% 15.00% 10.00% 5.00% 0.00% Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree Apr-13 Jan-14 15
16 I was able to objectively prioritize the research topics, without giving special preference to topics that are more relevant in my professional or personal life 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree Apr-13 Jan-14 16
17 PCORI's method for research topic prioritization will help PCORI fund research that can inform health care decisions by patients 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree Apr-13 Jan-14 17
18 Evaluation questions: 1 of 3 1. What is the impact of PCORI s approach on: perspectives incorporated into topic selection process, the topics selected for funding, and PCORI projects filling identified research gaps? Portfolio comparison PCORI vs NIH Stakeholder rating of topic relevance Usefulness to end users PEG Meeting, November 5,
19 Evaluation Questions: 2 of 3 2. Compared to broad funding announcements, what is the effect of targeted funding announcements on the impact of information? Stakeholder rating Information use PEG Meeting, November 5,
20 PEG Meeting, November 5,
21 Establishing metrics: Evaluation questions Is topic capture from the public yielding targeted PFAs and funded research proposals? How well does the PCORI research prioritization process address research gaps identified by scientists, patients, and stakeholders? PEG Meeting, November 5,
22 Submitted Topics by Disease/Condition* Allergies & Immune Disorders Blood Disorders Cancer Cardiovascular Health Dental Health Digestive Disorders Ear, Nose and Throat Diseases Eye Diseases Infectious Diseases Kidney Disease Liver Disease Mental/Behavioral Health Muscular and Skeletal Disorders Nervous System Disorders Nutritional and Metabolic Disorders Rare Diseases Reproductive and Perinatal Health Respiratory Diseases Skin Diseases Trauma/Injury Urinary Disorders *Excludes topics where the disease/condition is Unspecified 1.84% 0.08% 0.50% 0.25% 0.34% 0.42% 2.60% 1.34% 0.50% 1.09% 0.67% 2.93% 8.04% 7.29% 6.95% 7.04% 9.55% 9.21% 10.05% 10.39% 16.33% PEG Meeting, November 5,
23 Allergies and Immune Disorders Cancer Cardiovascular Health Digestive System Diseases Infectious Diseases Kidney Disease Liver Disease Mental/Behavioral Health Multiple/co-morbid chronic conditions Muscular and Skeletal Disorders Neurological Disorders Nutritional and Metabolic Disorders Other or Non-Disease Specific Rare Diseases Reproductive and Perinatal Health Respiratory Diseases Skin Diseases Trauma/Injury *excludes all Methods projects FUNDED PROJECTS BY DISEASE/CONDITION AND PROGRAM AREA (N=222)* AD APDTO CDR IHS NUMBER OF FUNDED PROJECTS PEG Meeting, November 5,
24 % of Total Submitted Topics (n=1163) v Funded Projects (n=189) by Disease/Condition* Submitted Topics Funded Projects 18.00% 16.00% 14.00% 12.00% 10.00% 8.00% 6.00% 4.00% 2.00% 0.00% *For topics, this does not include topics which do not specify a disease/condition. For projects, this does not include projects which are Methods, non-disease specific, or deal with multiple chronic conditions. PEG Meeting, November 5,
25 Spring 2013 Submitted Topics (N=923) & Prioritized Topics by Condition (N=33)* Urinary Disorders Trauma Respiratory Disorders Reproductive and Perinatal Care Nutritional and Metabolic Disorders Neurological Disorders Muscular and Skeletal Disorders Mental Health Liver Diseases Kidney Disease Infectious Diseases Genetic Disorders and Rare Disease Eye Diseases Ear, Nose and Throat Disorders Digestive Disorders Dermatology Dental Health Cardiovascular Health Cancer Blood Disorders Allergies and Immune Disorders *Excludes Unspecified topics (submitted N=556; prioritized N=13) Submitted topics (%) Prioritized Topics (%)
26 Comparison of submitted topics to IOM 100 EXACT MATCH The suggestion has the exact (or nearly exact) wording of the IOM 100, or the suggestion includes both the specific condition and intervention/comparators of an IOM 100. SIMILAR The suggestion matches an IOM 100 disease/condition(s), or matches an IOM 100 intervention. DISSIMILAR The suggestion does not match any of the disease/conditions or interventions of the IOM 100. % Matching IOM 100 Topics Exact Similar Not Similar PEG Meeting, November 5,
27 Submitted Topics Matching IOM 100 Priorities by Condition (N=1200)* Allergies/Immune Disorders Blood Disorders Cancer Cardiovascular Health Dental Health Dermatology Digestive Disorders Ear/Nose/Throat Diseases Eye Diseases Genetic Disorders/Rare Diseases Infectious Diseases Kidney Disease Liver Diseases Mental/Behavioral Health Muscular/Skeletal Health Nervous System Disorders Nutritional/Metabolic Disorders Reproductive/Perinatal Health Respiratory Diseases Trauma/Injury Urinary Disorders % Exact Match % Similar Match % Not Similar *excludes Unspecified topics N=603
28 Participating in the Advisory Panel meeting helped me to understand other peoples' perspectives on research % 90.00% 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Strongly Disagree Somewhat Disagree Apr-13* Neutral Somewhat Agree Strongly Agree Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree *No data available for Jan-14 28
29 The Advisory Panel meeting gave me the opportunity to provide input on PCORI's research topics % 90.00% 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree Apr-13 Jan-14 29
30 PCORI's method for research topic prioritization will help PCORI fund research that can inform health care decisions by patients % 90.00% 80.00% 70.00% 60.00% 50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Strongly Disagree Somewhat Disagree Neutral Somewhat Agree Strongly Agree Apr-13 Jan-14 30
31 April 2013 Prioritization by Stakeholder APDTO Panel (1 of 2) Patients Clinicians Researchers Other Stakeholders Total Ranking 31
32 April 2013 Prioritization by Stakeholder APDTO Panel (2 of 2) Patients Clinicians Researchers Other Stakeholders Total Ranking 32
33 Key Take-Away Points PCORI is evaluating topic capture and research prioritization along with other PCORI work. We are looking at the: types of stakeholders that submit topics contribution to prioritization by stakeholder type comparison of submitted topics to PCORI-funded topics. What other information should we collect to evaluate the impact of our topic capture and research prioritization process? PEG Meeting, November 5,
34 Appendix PEG Meeting, November 5,
35 Goal #1: Usefulness Criteria User-Driven The end-users (patients, clinicians, payers, organizations, health systems etc.) of the information have been identified (e.g., in the literature, through engagement with partners). The end-users (patients, clinicians, payers, organizations, health systems etc.) have identified this information would fill a critical gap (e.g., end-users generated the research questions). The end-users have committed to using the information (e.g., systems administrators/clinicians/etc. have committed to implement the intervention) User-Focused The research assesses options that are relevant for the end users of the information. The end-users were involved in choosing or developing the options. The research assesses the outcome(s) that will comprehensively address the needs of the endusers. Real-World Users Results can provide a clinically (in addition to statistically) significant answer. The study would provide a clear answer, rather than calling for further research. Results can inform decisions of end-user(s) with specific characteristics, conditions, and preferences. Results can be scaled/spread beyond the traditional study setting for a wider net impact. PEG Meeting, November 5,
36 Goal #2: Uptake Dissemination (Measure for all PCORI funded studies) Results reported back to study participants Access to PCORI study report Presentations: Scientific/professional audiences Lay audiences Bibliometrics: # of Publications Time to publication Impact factor Citations Alternative metrics for key groups (patients, clinicians, payers, etc.): # manuscript downloads # manuscript bookmarks Media coverage Social media coverage Uptake and Use (Measure for a subset of PCORI funded studies) Adoption of study findings in the study setting Incorporation into: Systematic reviews Patient and consumer education materials Graduate Medical Education (GME) or Continuing Medical Education (CME) Practice guidelines Decision making infrastructure (e.g. electronic decision aids, clinical reference tools) Payer policies Institutional, local, state, and national policy Impact: Changes in Health Decisions or Care and Outcomes (Measure for small set of exemplar studies) Improvement in health decisions or health care quality and improved health outcomes in relevant populations Note: Most of these metrics are typically not measurable until after study completion, and in many cases, are typically not measureable until several years after study completion. PEG Meeting, November 5,
37 Goal #3: Influence We are now or soon will be measuring: Endorsement, Promotion, and Dissemination of PCORI work Use of PCORI Methodology Standards for Patient-Centeredness Use of PCORI approaches: Topic Generation and Research Prioritization Merit Review Engagement Communication and Dissemination Use of PCORI guidance re: Patient-Centered CER Use of PCORI-supported curricula or training Collaborations/Co-funding with other funders We will have to wait a few more years to measure: Use of PCOR Methods evidence Use and support of PCORnet PEG Meeting, November 5,
38 Evaluation Framework PEG Meeting, November 5,
39 Topic Capture and Targeted Funding Falls in the Elderly: Clinical Trial of a Multifactorial Fall Injury Prevention Strategy in Older Persons Treatment Options for Severe Asthma in African- Americans and Hispanics & Latinos Comparative Effectiveness Research on Medical and Surgical Treatment for Uterine Fibroids Obesity Treatment Options Set in Primary Care For Underserved Populations The Effectiveness of Transitional Care PEG Meeting, November 5,
40 Topics prioritized 1-5 by Advisory Panels, received pragmatic trial application Identifying lung cancer in people with lung nodules Ductal Carcinoma Interventions to Promote Tobacco Cessation Among Vulnerable Populations Integration of Mental and Behavioral Health Services into Primary Care Settings Care management of multiple chronic conditions Hepatitis C Treatment options for opioid substance abuse Migraine headaches Coronary Artery Disease Treatment options for autism Osteoarthritis Heart attacks among racial and ethnic minorities Proton beam therapy for breast, lung, and prostate cancer PEG Meeting, November 5,
41 Topics prioritized 1-3 by Advisory Panels, prioritized by at least 2 other stakeholders (e.g. IOM, AHIP) Ductal Carcinoma Integration of mental and behavioral health services into primary care settings Cancer management Palliative care management Treatment Strategies for Atrial Fibrillation Migraine headache Coronary Artery Disease Major depressive disorders Treatment options for autism Heart attacks among racial and ethnic minorities PEG Meeting, November 5,
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