Engaging family caregivers through shared access to the electronic health record
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)
Planning for transformational change to care partner proxy access
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” is to develop and test ways of increasing care partner use of online patient portals via proxy access.
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.
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 with input from multiple stakeholders, including patients, care partners, clinicians, and healthcare administrators.
Phase 1 Goal: Develop partnerships with three clinical sites.
Phase 2 Goals:
- Create educational materials and toolkits for patients, clinicians, and administrative staff, and
- Develop a proposal and evaluation plan for a health system-level demonstration project to be conducted in a subsequent phase
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 is a private United States-based philanthropy whose current mission is to improve the health of older Americans.