Engaging family care partners through shared access to the electronic health record
Demonstration project for transformational change to care partner shared access to the online patient portal
Millions of older adults in the United States manage their health with the help of family and other unpaid care partners. Yet despite the importance of family care partners for ensuring optimal quality of life and care for older adults, they are often unidentified, assessed or supported in care delivery.
The aim of “Engaging Family Caregivers through Shared Access to the Electronic Health Record: A Multi-Site Demonstration” is to develop and test ways of increasing care partner use of online patient portals via shared access (sometimes referred to as “proxy access”). This project is funded by The John A. Hartford Foundation. The original 3-year project (July 2021-June 2024) built upon an 18-month planning grant (January 2020-June 2021), also funded by The John A. Hartford Foundation, which focused on establishing the partnerships and resources required to launch a demonstration aimed at spreading shared access to the electronic health record for family caregivers. In 2024, this project continued by way of a no-cost extension through June 2025.
Through this work, researchers at Beth Israel Deaconess Medical Center and Johns Hopkins School of Public Health are partnering with and building on the OpenNotes movement, which promotes shared access to electronic health records through secure patient portals.
The 3-year demonstration project is being developed and implemented in partnership with three health systems: Providence, University of Utah Health, and University of Rochester Medical Center. At each site the demonstration will take place initially within a designated service delivery line that serves a high proportion of elderly patients.
This work aims to enable family care partners to access more easily the health information needed to coordinate and manage care of older adults, particularly those with complex health conditions. This intervention is being co-designed and implemented with input from multiple stakeholders, including patients, care partners, clinicians, staff, and healthcare administrators.
Project goals and objectives
The project’s overall goal is to stimulate widespread adoption and use of caregiver shared access to the electronic health record across health care delivery through three objectives:
- Implement a demonstration to increase the uptake and use of shared access to the patient portal among family caregivers at three organizations
- Evaluate adoption and use of shared portal functionality and the effects of the demonstration for care delivery stakeholders
- Disseminate best practices and lessons learned to promote widespread adoption.
Demonstration website
Coalition for Care Partners: coalitionforcarepartners.org
Project contact
Relevant Research
Shared Access project team
Co-Principal Investigators
- Cait DesRoches, DrPH, Director, OpenNotes, Beth Israel Deaconess Medical Center, Harvard Medical School
- Jennifer Wolff, PhD, Eugene and Mildred Lipitz Professor, Johns Hopkins Bloomberg School of Public Health
Co-Investigators
- Vadim Dukhanin, MD, MHS, Johns Hopkins Bloomberg School of Public Health
- Kelly Gleason, PhD, RN, Johns Hopkins School of Nursing
- Deb Wachenheim, MPP, OpenNotes, Beth Israel Deaconess Medical Center
Project Manager
- Danielle Peereboom, MPH, Johns Hopkins Bloomberg School of Public Health
Clinical Research Coordinator
- Ria Shah, MS, OpenNotes, Beth Israel Deaconess Medical Center
Human Centered Design Unit
- Isabel Hurwitz, OpenNotes, Beth Israel Deaconess Medical Center
- Amanda Norris, MDiv, OpenNotes, Beth Israel Deaconess Medical Center
- Liz Salmi, OpenNotes, Beth Israel Deaconess Medical Center
- Danny Scerpella, MPH, Johns Hopkins Bloomberg School of Public Health
Project partner organizations
Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Providence, Portland, OR
University of Utah Health, Salt Lake City, UT
University of Rochester Medical Center, Rochester, NY
Funding provided by
The John A. Hartford Foundation
The John A. Hartford Foundation is a private United States-based philanthropy whose current mission is to improve the health of older Americans.
Cambia Health Foundation invests in and partners with organizations to advance palliative care quality, access and understanding to improve the behavioral health of underserved children, and transform health care to a more person-focused and economically sustainable system.
