Shared Access to Adults' Patient Portals: A Secret Shopper Exercise

Abstract

Background Millions of Americans manage their health care with the help of a trusted individual. Shared access to a patient's online patient portal is one tool that can assist their care partner(s) in gaining access to the patient's health information and allow for easy exchange with the patient's care team. Shared access provides care partners with a validated and secure method for accessing the patient's portal account using their own login credentials. Shared access provides extra privacy protection and control to the patient, who designates which individuals can view their record. It also reduces confusion for the care team when interacting with the care partner via the portal. Shared access is underutilized among adult patients' care partners.

Objectives Investigate the process of granting or receiving shared access at multiple health care organizations in the United States to learn about barriers and facilitators experienced by patients and care partners.

Methods The Shared Access Learning Collaborative undertook a “Secret Shopper” exercise. Participants attempted to give or gain shared access to another adult's portal account. After each attempt they completed a 14-question survey with a mix of open- and closed-ended questions.

Results Eighteen participants attempted to grant or receive shared access a total of 24 times. Fifteen attempts were successful. Barriers to success included requiring paper forms with signatures, lack of knowledgeable staff, lack of access to technical support, and difficult-to-navigate technology. Facilitators included easy-to-navigate online processes and accessible technical help. Participants who were successful in gaining shared access reported feeling more informed and able to engage in shared decision-making.

Conclusion The outcomes of our secret shopper exercise underscore the importance of collaboration aimed at learning from diverse encounters and disseminating the best practices. This is essential to address technical, informational, and organizational obstacles that may impede the widespread and accessible adoption of shared access.

Keywords

patient portal - caregiver - informal caregiver - family caregiver - patient engagement - proxy access - shared access

Protection of Human and Animal Subjects

The larger study, involving pilot interventions at three health systems, was reviewed and approved by the Institutional Review Boards at Beth Israel Deaconess Medical Center and Johns Hopkins Medicine.

Publication History

Received: 29 February 2024

Accepted: 19 July 2024

Accepted Manuscript online:
22 July 2024

Article published online:
09 October 2024

• References

• 1 Schulz R, Eden J. Families Caring for an Aging America. National Academies Press; 2016
• 2 Wolff JL, Freedman VA, Mulcahy JF, Kasper JD. Family caregivers' experiences with health care workers in the care of older adults with activity limitations. JAMA Netw Open 2020; 3 (01) e1919866
• 3 Sherman DW, McGuire DB, Free D, Cheon JY. A pilot study of the experience of family caregivers of patients with advanced pancreatic cancer using a mixed methods approach. J Pain Symptom Manage 2014; 48 (03) 385-99.e1 , 2
• 4 Carlsen B, Lundberg K. 'If it weren't for me…': perspectives of family carers of older people receiving professional care. Scand J Caring Sci 2018; 32 (01) 213-221
• 5 Dukhanin V, Wolff JL, Salmi L. et al; Shared Access Project Team. Co-designing an initiative to increase shared access to older adults' patient portals: stakeholder engagement. J Med Internet Res 2023; 25: e46146
• 6 Wolff JL, Spillman BC, Freedman VA, Kasper JD. A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med 2016; 176 (03) 372-379
• 7 Gleason KT, Peereboom D, Wec A, Wolff JL. Patient portals to support care partner engagement in adolescent and adult populations: a scoping review. JAMA Netw Open 2022; 5 (12) e2248696
• 8 Reed ME, Huang J, Brand R. et al. Communicating through a patient portal to engage family care partners. JAMA Intern Med 2018; 178 (01) 142-144
• 9 Latulipe C, Mazumder SF, Wilson RKW. et al. Security and privacy risks associated with adult patient portal accounts in U.S. hospitals. JAMA Intern Med 2020; 180 (06) 845-849
• 10 Gleason KT, Wu MMJ, Wec A. et al. Use of the patient portal among older adults with diagnosed dementia and their care partners. Alzheimers Dement 2023; 19 (12) 5663-5671
• 11 Wolff JL, Dukhanin V, Burgdorf JG, DesRoches CM. Shared access to patient portals for older adults: implications for privacy and digital health equity. JMIR Aging 2022; 5 (02) e34628
• 12 OpenNotes, Johns Hopkins University. Coalition for Care Partners. Coalition for Care Partners. 2022 . Accessed June 17, 2024 at: https://coalitionforcarepartners.org/
• 13 Wolff JL, Kim VS, Mintz S, Stametz R, Griffin JM. An environmental scan of shared access to patient portals. J Am Med Inform Assoc 2018; 25 (04) 408-412
• 14 Urquhart C. Grounded Theory for Qualitative Research: A Practical Guide. Sage Publications, Ltd; 2013
• 15 Brod M, Tesler LE, Christensen TL. Qualitative research and content validity: developing best practices based on science and experience. Qual Life Res 2009; 18 (09) 1263-1278
• 16 Antonio MG, Petrovskaya O, Lau F. The state of evidence in patient portals: umbrella review. J Med Internet Res 2020; 22 (11) e23851
• 17 Walker J, Leveille S, Kriegel G. et al. Patients contributing to visit notes: mixed methods evaluation of OurNotes. J Med Internet Res 2021; 23 (11) e29951
• 18 Richwine C, Johnson C, Patel V. Disparities in patient portal access and the role of providers in encouraging access and use. J Am Med Inform Assoc 2023; 30 (02) 308-317
• 19 Ratcliff CL, Krakow M, Greenberg-Worisek A, Hesse BW. Digital Health Engagement in the US population: insights from the 2018 Health Information National Trends Survey. Am J Public Health 2021; 111 (07) 1348-1351
• 20 Reynolds TL, Cobb JG, Steitz BD, Ancker JS, Rosenbloom ST. The state-of-the-art of patient portals: adapting to external factors, addressing barriers, and innovating. Appl Clin Inform 2023; 14 (04) 654-669
• 21 Armstrong M, Benda NC, Seier K. et al. Improving cancer care communication: identifying sociodemographic differences in patient portal secure messages not authored by the patient. Appl Clin Inform 2023; 14 (02) 296-299
• 22 Ganta T, Appel JM, Genes N. Patient portal access for caregivers of adult and geriatric patients: reframing the ethics of digital patient communication. J Med Ethics 2023; 49 (03) 156-159
• 23 Sarabu C, Sharko M, Petersen C, Galvin H. Shifting into action: from data segmentation to equitable interoperability for adolescents (and everyone else). Appl Clin Inform 2023; 14 (03) 544-554
• 24 Petersen C, Galvin HK, Lehmann CU, Sharko M. Equitable interoperability through precise control of sensitive health information: an emerging pathway to health equity. Ann Intern Med 2024; 177 (03) 387-388
• 25 Office of the National Coordinator for Health Information Technology (ONC). Health Data, Technology, and Interoperability: Certification Program Updates, Algorithm Transparency, and Information Sharing (HTI-1) Final Rule. HealthIT.gov. 2023: 1-5
• 26 Furukawa MF, Machta RM, Barrett KA. et al. Landscape of health systems in the United States. Med Care Res Rev 2020; 77 (04) 357-366