Accelerating the Use of
Findings from Patient-
Research in Clinical
Practice to Improve Health
and Health Care
Crystal Bell, Lyle Carrera, Austen
Applegate, and Joe Alper, Rapporteurs
Board on Health Care Services
Health and Medicine Division
Proceedings of a Workshop Series
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and the Department of Health and Human Services Agency for Healthcare Research and Quality. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-69513-8
International Standard Book Number-10: 0-309-69513-9
Digital Object Identifier: https://doi.org/10.17226/26753
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Accelerating the use of findings from patient-centered outcomes research in clinical practice to improve health and health care: Proceedings of a workshop series. Washington, DC: The National Academies Press. https://doi.org/10.17226/26753.
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PLANNING COMMITTEE FOR A WORKSHOP ON ACCELERATING THE USE OF FINDINGS FROM PATIENT-CENTERED OUTCOMES RESEARCH IN CLINICAL PRACTICE TO IMPROVE HEALTH AND HEALTH CARE1
LAUREN S. HUGHES (Chair), Associate Professor of Family Medicine and State Policy Director of the Farley Health Policy Center, University of Colorado
JEN F. BROWN, Co-Founder and Co-Director, Alliance for Research in Chicagoland Communities, Northwestern University
MEGAN D. DOUGLAS, Assistant Professor, Department of Community Health and Preventive Medicine and Director of Research and Policy, National Center for Primary Care, Morehouse School of Medicine
CATHERINE L. KOTHARI, Associate Professor and Population Health Scientist, Division of Epidemiology and Biostatistics, Homer Stryker MD School of Medicine, Western Michigan University
MEGHAN B. LANE-FALL, Vice Chair of Inclusion, Diversity, and Equity; David E. Longnecker Associate Professor of Anesthesiology and Critical Care; and Associate Professor, Biostatistics, Epidemiology, and Informatics, University of Pennsylvania Perelman School of Medicine; Founding Co-Director, Penn Center for Perioperative Outcomes Research and Transformation; Vice President, Anesthesia Patient Safety Foundation
CARA E. NIKOLAJSKI, Director of Research Design and Implementation, UPMC Center for High-Value Health Care, University of Pittsburgh Medical Center
BRIAN RIVERS, Professor and Director, Cancer Health Equity Institute, Morehouse School of Medicine
SARAH H. SCHOLLE, Vice President, Research and Analysis, National Committee for Quality Assurance
1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop Series rests with the workshop rapporteurs and the institution.
CRYSTAL BELL, Associate Program Officer
AUSTEN APPLEGATE, Research Associate (since May 2022)
LORI BRENIG, Research Associate (May 2022–July 2022)
TORRIE BROWN, Senior Program Assistant (May 2022–July 2022)
LYLE CARRERA, Research Associate (since June 2022)
JOSEPH GOODMAN, Senior Program Assistant (May 2022–July 2022)
RUKSHANA GUPTA, Senior Program Assistant (March 2022–June 2022)
SIHAM IDRIS, Program Assistant (December 2021–March 2022)
SHARYL NASS, Senior Board Director
ARZOO TAYYEB, Finance Business Partner
JOE ALPER, Consulting Writer
This Proceedings of a Workshop Series was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings:
WALETHA WASSON, University of Tennessee
MARGARET I. GRADIE, University of Massachusetts Amherst
JEFFERY ULLMAN, Stanford University (Emeritus)
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by KATHRYN MCDONALD, Johns Hopkins University. She was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.
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The National Academies of Sciences, Engineering, and Medicine’s Board on Health Care Services thanks planning committee chair Lauren S. Hughes for her valuable contributions to the development and organization of this workshop. The board wishes to thank all the members of the planning committee, who collaborated to ensure a workshop complete with informative presentations and rich discussions. Finally, the board thanks the speakers and moderators, who generously shared their expertise and their time with workshop participants.
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2 WORKSHOP 1 KEYNOTE: COMMUNITY HEALTH WORKERS
Community Health Workers: A Link Between Provider and Patient
3 WORKSHOP 1, SESSION 1: DEVELOPING A COORDINATED INTERDISCIPLINARY APPROACH TO DECISION MAKING AROUND WHERE TO FOCUS AHRQ’S PCORTF INVESTMENTS
A Focus on Goals and Authentic Partnerships
Practice-Based Research Networks and Community Engagement
4 WORKSHOP 1, SESSION 2: TRAINING PCOR INVESTIGATORS
Collaborations for Training Community-Based Researchers
Educational Training for the Next Generation of Investigators
5 WORKSHOP 1, SESSION 3: SUSTAINABLE STRATEGIES AND DIGITAL TOOLS TO EXPAND IMPLEMENTATION OF PCOR FINDINGS
Using the Learning Collaborative Approach for Implementing and Scaling Innovation
Person-Centered and Sustainable Digital Reproductive Health Interventions
Engaging People in Innovative Digital Interventions
6 WORKSHOP 2 KEYNOTE: COMMUNITY ENGAGEMENT IN PCOR FOR HEALTH EQUITY
Meaningful Community Engagement to Advance Health Equity in Health Systems Transformation
7 WORKSHOP 2, SESSION 1: POSSIBILITIES FOR AHRQ–ASPE–PCORI COLLABORATIONS TO IMPROVE HEALTH EQUITY
The Role of Data in Health Equity
Strengthening the Primary Care System While Advancing Health Equity
Addressing Health Equity Through Dissemination and Implementation Science
Community Partnerships in Research
8 WORKSHOP 2, SESSION 2: OPPORTUNITIES FOR AHRQ, ASPE, PCORI COLLABORATIONS TO IMPROVE SUSTAINABILITY OF THEIR EFFORTS
State-Level Data Collaborations
AHRQ–ASPE–PCORI Collaborations to Improve Effort Sustainability
9 WORKSHOP 3, SESSION 1: MEASURING THE IMPACT OF DISSEMINATION PROJECTS
Evaluating Dissemination and Implementation Projects
Using Digital Tools for Dissemination and Implelentation in the Community
Community Engagement in Evaluating the Effectiveness of Dissemination and Implementation Projects
10 WORKSHOP 3, SESSION 2: MEASURING THE IMPACT OF DISSEMINATION PROJECTS PART 2
Generalizability and Temporality in Assessing Effect
Clinician Engagement With a Breast Reconstruction Decision Support Tool
Incorporating PCOR into Clinical Practice: A Digital Technology Case Study
11 WORKSHOP 4, SESSION 1: EFFECTIVE COMMUNICATION TOOLS
Translating Policy and Patient-Centered Outcomes Outside the Institutional Bubble
Perspectives in Health Communication
How Law and Policy Can Advance Health Equity
12 WORKSHOP 4, SESSION 2: INFORMING EVIDENCE-BASED POLICY MAKING
Changing Access to Care for Undocumented Immigrants with Data
Dissemination Research to Promote Evidence-Informed Policy Making
C BIOGRAPHICAL SKETCHES OF THE SPEAKERS
Box, Figures, and Table
7-1 One Community’s Guiding Principles for University Engagement
2-1 Community health workers address all stages of health inequity
2-2 Project IMPaCT’s ordered process that allows community health workers to achieve success consistently
5-1 Conceptual model for experimental therapeutics to target engagement as a mediating mechanism for digital mental health
5-2 Implementation strategies for digital mental health
6-1 A conceptual model for assessing community engagement
9-1 Total referrals (left) and referrals per 1,000 cases (right) for use of mAbs in Colorado as of July 31, 2021
10-1 A large difference in the slope of the enrollment versus risk relationship indicates that the incentive results in undue inducement (graph is for illustrative purposes and does not represent data from an actual study)
10-2 A large difference in the slope of the enrollment versus incentive size according to economic status indicates that the incentive results in unjust inducement (graph is for illustrative purposes and does not represent data from an actual study)
10-3 Evolving applications of digital technology in health and health care
11-1 The public health impact pyramid
11-2 The role of law in advancing AHRQ’s crosscutting strategies
12-1 Medicaid-covered provision of standard dialysis for undocumented immigrants in 2019
12-1 Audience Segmentation According to Beliefs About Mental Health and Substance Use Disorder
Acronyms and Abbreviations
|AHRQ||Agency for Healthcare Research and Quality|
|AI/ML||artificial intelligence and machine learning|
|ASPE||Assistant Secretary for Planning and Evaluation|
|BETTER||Behavioral Economics to Transform Trial Enrollment Representativeness|
|CCTSI||Clinical and Translational Sciences Institute|
|CDC||Centers for Disease Control and Prevention|
|CDU||Charles R. Drew University of Medicine and Science|
|CHECS||Collaborations for Health and Empowered Community-Based Scientists|
|CMS||Centers for Medicare and Medicaid Services|
|COM-B||Capability, Opportunity, and Motivation Model of Behavior|
|CU||University of Colorado|
|EnCoRE||Enhancing Community Health Center Patient-Centered Outcomes Research Engagement|
|EHR||electronic health record|
|FDA||Food and Drug Administration|
|HHS||Department of Health and Human Services|
|HRSA||Health Resources and Services Administration|
|ICU||intensive care unit|
|IMPaCT||Individualized Management for Patient-Centered Targets|
|MODRN||Medicaid Outcomes Distributed Research Network|
|NAM||National Academy of Medicine|
|NAMCS||National Ambulatory Medical Care Survey|
|NCPC||National Center for Primary Care|
|NIH||National Institutes of Health|
|OMB||Office of Management and Budget|
|PBRN||practice-based research network|
|PCOR||patient-centered outcomes research|
|PCORI||Patient-Centered Outcomes Research Institute|
|PCORTF||Patient-Centered Outcomes Research Trust Fund|
|RE-AIM||Reach, Effectiveness, Adoption, Implementation, and Maintenance|
|RETAIN||Randomized Evaluation of Trial Acceptance by Incentive|
|SHADAC||State Health Access Data Assistance Center|
|SNOCAP||State Networks of Colorado Ambulatory Practices & Partners|
|T-MSIS||Transformed Medicaid Statistical Information System|
|UPMC||University of Pittsburgh Medical Center|
|UC||University of California|
|VHA||Veterans Health Administration|