Communicating with caregivers and family care partners and coordinating care at home represent central challenges in managing medical conditions. Over 40 million Americans act as family care partners, including by scheduling and attending visits and communicating with physicians and pharmacies, sometimes across geographic distances.1,2 Patient portals can help to manage health information, communication with health care professionals, pharmacy refills, and appointments, but some patients need or prefer to have a family member access the portal on their behalf.3 Despite growing care partner portal use, measurement challenges and limited evidence exist, including published reports of less than 1% of patients formally sharing outpatient portal access.4 We examined care partner experiences in using a portal for a family member.
In a patient-centered research project, patients partnered in designing a survey to examine portal use by care partners. All patients in an integrated delivery system had access to a portal offering appointment scheduling, laboratory results, pharmacy refill orders, and secure messaging with health care professionals. Patients could formally use the portal to assign shared access for care partners, who could thereafter use their own care partner login credentials to act on behalf of the patient. Some patients might also informally provide access to their care partners by sharing their own patient login credentials. The Kaiser Permanente Northern California institutional review board approved the study and waived the requirement of written informed consent from study participants. Participants received a $20 gift card.
From March 1 to December 31, 2015, we surveyed a random sample of adult patients with a chronic condition (using clinical registries for asthma, diabetes, coronary artery disease, congestive heart failure, and hypertension) about their experience using the portal, collecting responses by mailed, electronic, or telephone survey. Respondents reported if they accessed the portal for another person, their relationship to that person, whether they accessed the portal using formal (care partner) or informal (patient) credentials, and their experiences, including convenience, ease of accessing and organizing health information, and timeliness. All results were weighted to account for stratified sampling strategy.
Among 1824 participants (70% response rate), 1392 (76.3%) were registered to use the portal and 17.6% had shared portal access with a care partner. Among portal users, 27.5% had also used the portal as a care partner for others, with 45.5% formally using care partner login credentials and 54.5% informally sharing patient credentials. Among care partners, 62.2% used the portal for a spouse, 34.9% for a child/grandchild, and 10.6% for a parent/grandparent (multiple possible). Age, sex, race, educational level, and household income were significantly associated with acting as a care partner through the portal (Table).
Among those using the portal as a care partner, 94.2% reported that it was more convenient than other ways of participating in another person’s health care, 87.4% reported that it helped in organizing their health information, and 92.0% reported that it was faster than other ways of participating in another person’s health care (Figure). In open-ended responses, patients reported that using the portal to act as a care partner for a family member reduced travel time, including for care partners acting from a geographic distance, and offered the opportunity to be involved by communicating directly with health care professionals, reviewing laboratory test results, and ordering medication refills.
In this study, more than 1 in 4 portal users also used the portal to coordinate care for a family member, often through informally shared access. Care partners reported portals as a convenient and timely way for family members to support patient self-care and to be included in communication with clinicians.
This study may have limited generalizability to populations without chronic conditions, without any portal use, or to other settings, and it is based on a cross-sectional self-reported survey. Still, we found that participants often used the portal on a family member’s behalf and reported that it offered an accessible and faster way to act as a care partner, including across geographic distance. Physicians and health systems should view portals as a means of communicating with families, not only patients, balancing care needs with privacy concerns. Such balancing will require more detailed investigation of patient preferences for information sharing and care partner activity.5
Corresponding Author: Mary E. Reed, DrPH, Kaiser Permanente Division of Research, 2000 Broadway, Oakland, CA 95612 (firstname.lastname@example.org).
Accepted for Publication: September 10, 2017.
Published Online: November 20, 2017. doi:10.1001/jamainternmed.2017.6325
Author Contributions: Dr Reed had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Reed, Brand, Ballard, Yamin, Hsu, Grant.
Acquisition, analysis, or interpretation of data: Reed, Huang, Brand.
Drafting of the manuscript: Reed, Huang.
Critical revision of the manuscript for important intellectual content: Huang, Brand, Ballard, Yamin, Hsu, Grant.
Statistical analysis: Reed, Huang, Brand.
Obtained funding: Reed, Brand, Hsu, Ballard, Grant.
Administrative, technical, or material support: Brand, Yamin, Hsu.
Study supervision: Reed.
Conflict of Interest Disclosures: None reported.
Funding/Support: This study was funded by Patient Centered Outcomes Research Institute grant PCORI IH-12-11-4925.
Role of the Funder/Sponsor: Patient Centered Outcomes Research Institute had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Additional Contributions: We thank the CONNECT Study Patient Partner Panel for their valuable perspectives and contributions to the study. Andrea Millman, MA (Kaiser Permanente Division of Research), managed data collection, made intellectual contributions to the survey design, and provided feedback on earlier versions of the manuscript. Ashley Richards, MA (Kaiser Permanente Division of Research), facilitated patient panel partnerships. Bruce Fireman, MA (Kaiser Permanente Division of Research), made intellectual contributions to the study design and interpretation of the results. Marc Jaffe, MD (The Permanente Medical Group), helped to interpret findings. Ilana Graetz, PhD (University of Tennessee Health Sciences Center), made intellectual contributions to the study design and interpretation of the results. There was no financial compensation.
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