Accelerating the Use of
Findings from Patient-
Centered Outcomes
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.

Project Staff

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

Consultant

JOE ALPER, Consulting Writer

Reviewers

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:

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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Acknowledgments

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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Contents

BOX, FIGURES, AND TABLE

ACRONYMS AND ABBREVIATIONS

1 INTRODUCTION

2 WORKSHOP 1 KEYNOTE: COMMUNITY HEALTH WORKERS

Introduction to Workshop

Sponsor Remarks from AHRQ

Community Health Workers: A Link Between Provider and Patient

Discussion

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

Discussion

4 WORKSHOP 1, SESSION 2: TRAINING PCOR INVESTIGATORS

Collaborations for Training Community-Based Researchers

Educational Training for the Next Generation of Investigators

Discussion

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

Discussion

Closing Summary of Workshop 1

6 WORKSHOP 2 KEYNOTE: COMMUNITY ENGAGEMENT IN PCOR FOR HEALTH EQUITY

Introduction

Meaningful Community Engagement to Advance Health Equity in Health Systems Transformation

Discussion

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

Discussion

8 WORKSHOP 2, SESSION 2: OPPORTUNITIES FOR AHRQ, ASPE, PCORI COLLABORATIONS TO IMPROVE SUSTAINABILITY OF THEIR EFFORTS

Maintaining Partnerships for Sustainable Data Collection

State-Level Data Collaborations

AHRQ–ASPE–PCORI Collaborations to Improve Effort Sustainability

Discussion

Closing Summary of Workshop 2

9 WORKSHOP 3, SESSION 1: MEASURING THE IMPACT OF DISSEMINATION PROJECTS

Workshop Introduction

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

Discussion

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

Discussion

Closing Summary of Workshop 3

11 WORKSHOP 4, SESSION 1: EFFECTIVE COMMUNICATION TOOLS

Workshop Introduction

Translating Policy and Patient-Centered Outcomes Outside the Institutional Bubble

Perspectives in Health Communication

How Law and Policy Can Advance Health Equity

Discussion

12 WORKSHOP 4, SESSION 2: INFORMING EVIDENCE-BASED POLICY MAKING

Conceptualizing and Conducting Policy-Relevant Research

Changing Access to Care for Undocumented Immigrants with Data

Dissemination Research to Promote Evidence-Informed Policy Making

Discussion

Closing Summary of Workshop 4

REFERENCES

APPENDIXES

A STATEMENT OF TASK

B WORKSHOP AGENDAS

C BIOGRAPHICAL SKETCHES OF THE SPEAKERS

D AHRQ’S PCORTF INVESTMENT STRATEGIC FRAMEWORK

Box, Figures, and Table

BOX

7-1 One Community’s Guiding Principles for University Engagement

FIGURES

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

TABLE

12-1 Audience Segmentation According to Beliefs About Mental Health and Substance Use Disorder

Acronyms and Abbreviations