Millions of Americans manage their health with the help of family, friends, and other care partners. These care partners have a profound effect on the quality of care and patient outcomes, but they often don’t have access to crucial information when coordinating or enacting the patient’s care plan.
In 2019 a convening of researchers, clinicians and health system representatives summarized the importance of shared access for patient privacy, integrity of electronic health record data, and respecting the role of care partners delivering and coordinating care.
The group evolved into the Coalition for Care Partners— led by the Johns Hopkins Bloomberg School of Public Health and Beth Israel Deaconess Medical Center— and launched a demonstration project, funded by the John A. Hartford Foundation and Cambia Health Foundation, to increase shared access across three health systems.
We expanded stakeholder engagement to better understand the national landscape on this topic while learning from the ongoing demonstration project. Here we build on our prior work by summarizing these activities, what was learned, and our recommendations for policymakers, clinical leadership, patients, and care partners.
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