CC BY 4.0 · ACI open 2021; 05(02): e104-e115
DOI: 10.1055/s-0041-1736632
Original Article

A Policy Framework to Support Shared Decision-Making through the Use of Person-Generated Health Data

Carolyn Petersen
1  Mayo Clinic, Rochester, Minnesota, United States
Margo Edmunds
2  AcademyHealth, Washington, Dist. Of Columbia, United States
Deven McGraw
3  Ciitizen, Corp., Palo Alto, California, United States
Elisa L. Priest
4  Baylor Scott and White Health, Dallas, Texas, United States
Jeffery R.L. Smith
5  Office of the National Coordinator for Health IT, U.S. Department of Health and Human Services, Washington, Dist. Of Columbia, United States
Eagan Kemp
6  Public Citizen, Washington, Dist. Of Columbia, United States
Hugo Campos
7  All of Us Research Program and California Precision Medicine Consortium (CaPMC), Oakland, California, United States
› Author Affiliations
Funding Financial support for this work was provided by a Eugene P. Washington PCORI engagement award to Margo Edmunds at AcademyHealth.


Background Individuals increasingly want to access, contribute to, and share their personal health information to improve outcomes, such as through shared decision-making (SDM) with their care teams. Health systems' growing capacity to use person-generated health data (PGHD) expands the opportunities for SDM. However, SDM not only lacks organizational and information infrastructure support but also is actively undermined, despite public interest in it.

Objectives This work sought to identify challenges to individual–clinician SDM and policy changes needed to mitigate barriers to SDM.

Methods Two multi-stakeholder group of consumers, patients, caregivers; health services researchers; and experts in health policy, informatics, social media, and user experience used a consensus process based on Bardach's policy analysis framework to identify barriers to SDM and develop recommendations to reduce these barriers.

Results Technical, legal, organizational, cultural, and logistical obstacles make data sharing difficult, thereby undermining use of PGHD and realization of SDM. Stronger privacy, security, and ethical protections, including informed consent; promoting better consumer access to their data; and easier donation of personal data for research are the most crucial policy changes needed to facilitate an environment that supports SDM.

Conclusion Data protection policy lags far behind the technical capacity for third parties to share and reuse electronic information without appropriate permissions, while individuals' right to access their own health information is often restricted unnecessarily, poorly understood, and poorly communicated. Sharing of personal information in a private, secure environment in which data are shared only with individuals' knowledge and consent can be achieved through policy changes.


This work is one of four papers co-authored by participants in a collaborative consensus project to develop a framework for using person-generated health data in shared decision-making. Each writing team included at least one consumer or caregiver representative along with other research, policy, and technology experts, and a user experience designer. The work was overseen by a diverse multisector advisory group co-chaired by Hugo Campos and Katherine Kim, with Jeffrey Corkran, Patricia Franklin, Sarah Greene, Megan O'Boyle, and Carolyn Petersen. Advice and consultation with Dana Lewis, Liz Salmi, and John Wilbanks and assistance and support from Lauren Adams and Tamara Infante are gratefully acknowledged.

All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily reflect the views of the Patient-Centered Outcomes Research Institute (PCORI) or its Board of Governors.

Authors' Contributions

M.E., H.C., and C.P. planned the workshop. Manuscript was approved by C.P. All the authors developed the recommendations and drafted the manuscript.

Protection of Human and Animal Subjects

No human subjects were involved in this project and institutional review board approval was not required.

Publication History

Received: 16 August 2020

Accepted: 09 September 2021

Publication Date:
15 November 2021 (online)

© 2021. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (

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