Engaging family caregivers 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. This 3-year project (July 2021-June 2024) builds 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.
Through this work, researchers at Johns Hopkins University and Beth Israel Deaconess Medical Center 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:
1) Implement a demonstration to increase the uptake and use of shared access to the patient portal among family caregivers at three organizations
2) Evaluate adoption and use of shared portal functionality and the effects of the demonstration for care delivery stakeholders
3) Disseminate best practices and lessons learned to promote widespread adoption.
Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity Journal of Medical Internet Research (2022)
Care Partners and Patient Portals—Faulty Access, Threats to Privacy, and Ample Opportunity JAMA Internal Medicine (2020)
Empowering informal caregivers with health information: OpenNotes as a safety strategy Joint Commission Journal on Quality and Patient Safety (2018)
Family Caregivers and Consumer Health Information Technology Journal of General Internal Medicine (2016)
Patients Who Share Transparent Visit Notes With Others: Characteristics, Risks, and Benefits Journal of Medical Internet Research (2014)
Cait DesRoches, DrPH, Director, OpenNotes, Harvard Medical School
Jennifer Wolff, PhD, Eugene and Mildred Lipitz Professor, Johns Hopkins Bloomberg School of Public Health
Vadim Dukhanin, MD, MHS
Deb Wachenheim, MPP
Project partner organizations
Johns Hopkins Bloomberg School of Public Health
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.