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Accepted for/Published in: JMIR Research Protocols

Date Submitted: Sep 20, 2024
Open Peer Review Period: Sep 24, 2024 - Nov 19, 2024
Date Accepted: Jan 6, 2025
(closed for review but you can still tweet)

The final, peer-reviewed published version of this preprint can be found here:

Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal–Based Intervention

DesRoches CM, Wachenheim D, Ameling J, Cibildak A, Cibotti N, Dong Z, Drane A, Hurwitz I, Meddings J, Naimark J, O'Donnell K, Winger C, Winnay SS, Young J, Wolff JL

Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal–Based Intervention

JMIR Res Protoc 2025;14:e66708

DOI: 10.2196/66708

PMID: 40053789

PMCID: 11920659

Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal Based Intervention

  • Catherine M DesRoches; 
  • Deborah Wachenheim; 
  • Jessica Ameling; 
  • Aysel Cibildak; 
  • Nancy Cibotti; 
  • Zhiyong Dong; 
  • Alexandra Drane; 
  • Isabel Hurwitz; 
  • Jennifer Meddings; 
  • Jody Naimark; 
  • Kimberly O'Donnell; 
  • Christine Winger; 
  • Sarah Stephens Winnay; 
  • Jordan Young; 
  • Jennifer L Wolff

ABSTRACT

Background:

In the United States, the landscape of unpaid care delivery is both challenging and complex, and millions of individuals undertaking the vital role of helping family (broadly defined) manage their health care and well-being. 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:

To develop and implement a patient portal-based intervention designed 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 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 22,152patients had received and 13,825 had submitted completed questionnaires (62.4%). 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.


 Citation

Please cite as:

DesRoches CM, Wachenheim D, Ameling J, Cibildak A, Cibotti N, Dong Z, Drane A, Hurwitz I, Meddings J, Naimark J, O'Donnell K, Winger C, Winnay SS, Young J, Wolff JL

Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal–Based Intervention

JMIR Res Protoc 2025;14:e66708

DOI: 10.2196/66708

PMID: 40053789

PMCID: 11920659

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