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Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal-Based
Catherine M DesRoches1, Deborah Wachenheim2, Jessica Ameling3
1OpenNotes, Department of Medicine, Harvard Medical School, Boston, MA, United States.
Background:
In the United States, the landscape of unpaid care delivery is both challenging and complex, with millions of individuals undertaking the vital role of helping families (broadly defined) manage their health care and well-being. This includes 48 million caregivers of adults, 42 million of whom are caregivers of adults aged 50 years or older. These family care partners provide critical and often daily support for tasks such as dressing and bathing, as well as managing medications, medical equipment, appointments, and follow-up care plans.
Objective:
This study aimed to implement a novel patient portal-based intervention to identify, engage, and support care partners in clinical settings.
Methods:
The project team collaborated with 3 health care organizations (6 primary care practices in total) to design and implement a patient portal-based intervention. Three days in advance of a visit, patients were invited to log on to their patient portal account and answer a brief questionnaire as part of the routine electronic check-in process asking them to (1) identify themselves as the patient or someone answering for the patient, (2) report major life changes, (3) set the agenda for the upcoming visit, and (4) report on care partner responsibilities. Respondents' answers to this brief questionnaire were available to providers ahead of the visit. Patients with care partner responsibilities, as well as care partners answering the questionnaire on behalf of patients, were provided a link to the ARCHANGELS Caregiver Intensity Index to measure the intensity of their caregiving role and motivate care partners to connect with suggested state and local resources.
Results:
The intervention was launched in September 2022 at Organization A. Organization B launched in May 2023 in one clinic and June 2023 in the other. In focus groups, staff and clinicians reported that the intervention was easy to implement and did not cause workflow disruption. At 6 months post implementation, across both organizations, a total of 22,152 patients had received questionnaires and 13,825 (62.4%) had submitted completed questionnaires. Full data will be reported at the completion of the intervention period.
Conclusions:
Early results suggest that the intervention could be an easily scalable and adaptable method of identifying and supporting care partners in clinical settings.
International Registered Report Identifier (Irrid):
DERR1-10.2196/66708.
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