Solutions for Increased Adoption of Patient Portal Shared Access: A Human-Centered Design Approach Using the Double Diamond Model

Abstract

Background

Achieving digital health equity and proper use of identity credentials is crucial as reliance on electronic modalities increases. Proxy access—now increasingly referred to as shared access—is a widely available functionality that offers identity credentials to care partners who assist loved ones in navigating the electronic care delivery demands of patients with complex care needs. However, adoption of these tools has been hindered by complicated user interfaces and low awareness.

Objective

Drawing on frameworks and principles rooted in human-centered design (HCD), we conducted an evaluation of a multisite quality improvement study designed to increase the awareness and adoption of shared access to patient portals for older adults and their care partners. Through feedback gathered from key informants, we identified barriers to the adoption of materials created for the parent quality improvement project, and synthesize additional implementation strategies from informant feedback to improve shared access.

Methods

We employed the Double Diamond Model (DDM) of HCD to guide our research. The DDM includes engaging a diverse group of community partners—older adults, care partners, health care system leaders, communications professionals—through focus groups and individual interviews. Our process involved identifying pain points related to registration for shared access, then synthesizing these insights through inductive coding and affinity mapping to generate solutions.

Results

An analysis of our community partner feedback revealed several themes, including the necessity for simplified patient portal registration, standardized terminology about shared access, and clear messaging strategies. A step-by-step video tutorial was developed as a prototype. The prototype was then implemented at a partner health system and received positive feedback, suggesting its potential for broader use.

Discussion

These findings emphasize the importance of involving “end users” (patients, care partners, health care system leaders, communications professionals) in the evaluation and implementation of digital health tools. Approaching challenges with an HCD mindset helped our team identify barriers to shared access adoption and led to the development of a tangible resource (prototype and video). This project highlights the potential for HCD to drive improvements in digital health equity.

Conclusion

This research demonstrates a practical application of HCD methods in developing effective solutions for enhancing shared access for older adults, and all people using patient portals.

Keywords

shared access - human centered design - consumer health informatics - caregivers - patient portal

Protection of Human and Animal Subjects

This work was reviewed and approved by the Beth Israel Deaconess Medical Center Committee on Clinical Investigations and was assigned protocol no.: 2022P000020.

Publikationsverlauf

Eingereicht: 24. Januar 2025

Angenommen: 14. September 2025

Artikel online veröffentlicht:
03. Dezember 2025

• References

• 1 Steitz BD, Wong JIS, Cobb JG, Carlson B, Smith G, Rosenbloom ST. Policies and procedures governing patient portal use at an Academic Medical Center. JAMIA Open 2019; 2 (04) 479-488
• 2 Salmi L, Blease C, Hägglund M, Walker J, DesRoches CM. US policy requires immediate release of records to patients. BMJ 2021; 372 (426) n426
• 3 Steitz BD, Sulieman L, Wright A, Rosenbloom ST. Association of immediate release of test results to patients with implications for clinical workflow. JAMA Netw Open 2021; 4 (10) e2129553
• 4 Wells S, Rozenblum R, Park A, Dunn M, Bates DW. Organizational strategies for promoting patient and provider uptake of personal health records. J Am Med Inform Assoc 2015; 22 (01) 213-222
• 5 NASEM. Families Caring for an Aging America. 2016
• 6 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
• 7 DHHS. Chapter 4: Allow portal access or caregivers. Patient Engagement Playbook
• 8 Salmi L, Peereboom D, Dorr DA, Graham LR, Wolff JL, DesRoches CM. Patient portals fail to collect structured information about who else is involved in a person's care. J Med Internet Res 2024; 26: e49394
• 9 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
• 10 Elias J, Gossey JT, Xi W. et al. Sharing clinical notes while protecting adolescent confidentiality and maintaining parental insight. Appl Clin Inform 2023; 14 (03) 555-565
• 11 Nazi KM, Turvey CL, Klein DM, Hogan TP. A decade of veteran voices: examining patient portal enhancements through the lens of user-centered design. J Med Internet Res 2018; 20 (07) e10413
• 12 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
• 13 Jackman KP, Ohene-Kyei ET, Barfield A. et al. Patient portal privacy: perspectives of adolescents and emerging adults living with HIV and the parental/guardian role in supporting their care. Appl Clin Inform 2023; 14 (04) 752-762
• 14 Deshpande N, Arora VM, Vollbrecht H, Meltzer DO, Press V. eHealth literacy and patient portal use and attitudes: cross-sectional observational study. JMIR Hum Factors 2023; 10: e40105
• 15 Shaver J. The state of telehealth before and after the COVID-19 pandemic. Prim Care 2022; 49 (04) 517-530
• 16 Richwine C. Progress and persistent disparities in patient access to electronic health information. JAMA Health Forum 2023; 4 (11) e233883
• 17 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
• 18 Wensing M, Sales A, Wilson P. et al. Implementation science and implementation science communications: a refreshed description of the journals' scope and expectations. Implement Sci 2021; 16 (01) 103
• 19 Supplee L, Boaz A, Metz A. Learning Across Contexts: Bringing Together Research on Research Use and Implementation Science. William T. Grant Foundation; 2023
• 20 Carey G, Dickinson H, Olney S. What can feminist theory offer policy implementation challenges?. Evid Policy 2019; 15 (01) 143-159
• 21 Albers B, Metz A, Burke K. et al. The mechanisms of implementation support - findings from a systematic integrative review. Res Soc Work Pract 2022; 32 (03) 259-280
• 22 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
• 23 Lyon AR, Dopp AR, Brewer SK, Kientz JA, Munson SA. Designing the future of children's mental health services. Adm Policy Ment Health 2020; 47 (05) 735-751
• 24 International Organization for Standardization. ISO 9241-210 Ergonomics of Human-System Interaction - Part 210: Human-Centered Design for Interactive Systems. 2010
• 25 Salmi L, Otis-Green S, Hayden A, Taylor LP, Reblin M, Kwan BM. Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: a participatory co-design approach. Neurooncol Pract 2024; 11 (05) 556-565
• 26 IDEO. What is design thinking? IDEO U.
• 27 van der Bijl-Brouwer M, Dorst K. Advancing the strategic impact of human-centered design. Des Stud 2017; 53: 1-23
• 28 Gleason KT, DesRoches CM, Wu MMJ. et al; Shared Access Project Team. A multisite demonstration of shared access to older adults' patient portals. JAMA Netw Open 2025; 8 (02) e2461803
• 29 Wachenheim D, Hurwitz I, Dukhanin V, Wolff JL, DesRoches CM. Shared access to adults' patient portals: a secret shopper exercise. Appl Clin Inform 2024; 15 (04) 817-823
• 30 Saad E, Elekyaby M, Ali E, Hassan S. Double diamond strategy saves time of the design process. International Design Journal. 2020; 10 (03) 211-222
• 31 Wang X, Huang Z, Xu T, Li Y, Qin X. Exploring the future design approach to ageing based on the double diamond model. Systems (Basel) 2023; 11 (08) 404
• 32 Kochanowska M, Gagliardi WR. with reference to Jonathan Ball. The Double Diamond Model: In Pursuit of Simplicity and Flexibility; 2022: 19-32
• 33 ZHAO Z, YU L, LYU S, WANG H. Improving self-management for long COVID: using double diamond model to design a mHealth app. Proc Hum Factors Ergon Soc Annu Meet 2023; 67 (01) 2274-2280
• 34 Corbin J, Strauss A. Grounded theory research: procedures, canons and evaluative criteria. Zeitscrift Für Soziologie. 1990; 19 (06) 418-427
• 35 Thomas DR. A general inductive approach for analyzing qualitative evaluation data. Am J Eval 2006; 27 (02) 237-246
• 36 Concannon TW, Meissner P, Grunbaum JA. et al. A new taxonomy for stakeholder engagement in patient-centered outcomes research. J Gen Intern Med 2012; 27 (08) 985-991
• 37 Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res 2015; 4 (02) 133-145
• 38 OpenNotes. EHR Shared Access for Family Care Partners. 2023 . Accessed July 16, 2024 at: https://www.opennotes.org/proxy-access/
• 39 Coalition for Care Partners. Connecting Care Partners through Health Information Technology. ; 2024. Accessed July 16, 2024 at: https://coalitionforcarepartners.org/#Learning-Collaborative
• 40 OpenNotes. OpenNotes Lab Insight Panel. Accessed July 14, 2024 at: https://www.opennotes.org/opennotes-lab/insight_panel/
• 41 Luma Institute LLC. Mural; Accessed, October 2024 at: https://mural.co/
• 42 Flood M, Ennis M, Ludlow A. et al. Research methods from human-centered design: Potential applications in pharmacy and health services research. Res Social Adm Pharm 2021; 17 (12) 2036-2043
• 43 Epic. MyChart: Proxy Access (For Desktop). YouTube. August 19, 2023. Accessed July 16, 2024 at: https://www.youtube.com/watch?v=UGQMeEAc7cI
• 44 Providence. Providence MyChart Shared Access Instructions. YouTube. November 9, 2023 Accessed July 15, 2024 at: https://www.youtube.com/watch?v=0llmL6zLpm4
• 45 Fair HL, Doherty KV, Klekociuk SZ, Eccleston CEA, Farrow MA. Broadening the reach of dementia risk-reduction initiatives: strategies from dissemination models. Scand J Public Health 2023; 51 (02) 301-308