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Issue Brief: Shared Access to the Patient Portal

This issue brief summarizes the activities and learnings of the Coalition for Care Partners around shared access. Research has spanned from 2019 to 2025, including the formation of the Shared Access Learning Collaborative. The Coalition offers recommendations for policymakers, clinical leadership, patients, and care partners.

People Overtrust AI-Generated Medical Advice despite Low Accuracy

Shekar S, Pataranutaporn P, Sarabu C, Cecchi, GA, Maes P. People Overtrust AI-Generated Medical Advice despite Low Accuracy. NEJM AI. 2025 May 13. doi: 10.1056/AIoa2300015

This article presents an analysis of how artificial intelligence (AI)–generated medical responses are perceived and evaluated by nonexperts. The increased trust placed in inappropriate AI-generated medical advice can lead to misdiagnosis.

Hospitalized patient portal access in the post-information blocking rule era

Cool JA, Zhang C, Yang J, Herzig SJ, DesRoches CM. Hospitalized patient portal access in the post-information blocking rule era. J Hosp Med. 2025 Jun 5. doi: 10.1002/jhm.70093.

This single-center, cross-sectional observational study highlights low patient portal utilization among hospitalized patients and disparities in access based on race/ethnicity, gender, age, and insurance status.

Users’ perspectives on a demonstration to increase shared access to older adults’ patient portals

Dukhanin V, Wolff JL, Wachenheim D, Salmi L, Gonzales MJ, Parshley M, Epstein S, Mohile S, Farrell TW, Supiano MA, DesRoches CM, and the Shared Access Project Team. Users’ perspectives on a demonstration to increase shared access to older adults’ patient portals. BMC Health Serv Res 25, 586 (2025). https://doi.org/10.1186/s12913-025-12755-0

As shared access uptake remains low, the Coalition for Care Partners, and three healthcare delivery organizations, co-designed an initiative promoting shared access to the patient portals of older adults.

A Proof-of-Concept Study for Patient Use of Open Notes with Large Language Models

Salmi L, Lewis DM, Clarke JL, Dong Z, Fischmann R, McIntosh E, Sarabu CR, DesRoches CM. A proof-of-concept study for patient use of open notes with large language models. JAMIA Open, Volume 8, Issue 2, April 2025, ooaf021, doi.org/10.1093/jamiaopen/ooaf021

Can AI chatbots help patients make sense of their medical notes? This first-of-its-kind study published in JAMIA Open finds that with the right prompt, large language models may become powerful partners in understanding complex health information.

Repeated Access to Patient Portal While Awaiting Test Results and Patient-Initiated Messaging

Steitz BD, Turer RW, Salmi L, Suresh U, MacDonald S, DesRoches CM, Wright A, Louissaint J, Rosenbloom, ST. Repeated Access to Patient Portal While Awaiting Test Results and Patient-Initiated Messaging. JAMA Netw Open. 2025;8(4):e254019. doi:10.1001/jamanetworkopen.2025.4019

A new study found that patients often refresh the portal while awaiting test results—especially for routine tests. This behavior is linked to increased messaging, suggesting that individual worry may drive communication more than the test itself.

Robert F Kennedy Jr’s proposal to remove public commentary from US health policy is a threat to science and public health

Salmi L, Walker J, Delbanco T, DesRoches C

In a recent BMJ opinion, OpenNotes leaders warn that a proposal by U.S. health secretary Robert F. Kennedy Jr. to eliminate public comment in federal health policymaking threatens transparency, public trust, and democratic values.

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

This study aimed to implement a novel patient portal–based intervention to identify, engage, and support care partners in clinical settings. Early results suggest that the intervention could be an easily scalable and adaptable method of identifying and supporting care partners in clinical settings.

A Multisite Demonstration of Shared Access to Older Adults’ Patient Portals

Gleason KT, DesRoches CM, Wu MMJ, Peereboom D, Dukhanin V, Farrell TW, Gonzales MJ, Sharma S, Mohile SG, Epstein S, Supiano MA, Parshley MC, Roth DL, Wolff JL; for the Shared Access Project Team. A Multisite Demonstration of Shared Access to Older Adults’ Patient Portals. JAMA Netw Open. 2025;8(2):e2461803. doi:10.1001/jamanetworkopen.2024.61803.

In this quality improvement study of 16,005 patients from 3 diverse US sites, new shared access registration was unchanged; however, use of shared access functionality among registered care partners increased. Care partners logged in more frequently, viewed more laboratory results and clinical notes, and scheduled more visits after the demonstration.

Patients and families reading their discharge summaries: A cross-sectional analysis of benefits, concerns, and implications

DesRoches CM, Herzig SJ, Dong Z, et al. Patients and families reading their discharge summaries: a cross-sectional analysis of benefits, concerns, and implications. J Hosp Med. 2025; 1-9. doi:10.1002/jhm.13594

Rapidly spreading information transparency could transform how patients engage in care and communicate with clinicians. Patients and families report benefits from reading discharge summaries; however, over a quarter reported a concern.

Advancing cancer care through digital access in the USA: a state-of-the-art review of patient portals in oncology

Suresh U, Ancker J, Salmi L, Diamond L, Rosenbloom T, Steitz B. Advancing cancer care through digital access in the USA: a state-of-the-art review of patient portals in oncology. BMJ Oncol. 2025;4:e000432.

Patient portal use among patients with cancer has increased significantly in recent years. This state-of-the-art review seeks to address and analyse literature involving patient portal use by patients with cancer and their care partners.

Is Routine Discharge Enough? Needs and Perceptions Regarding Discharge and Readmission of Palliative Care Patients and Caregivers

Kuntz AA, Chen VH, Ambady L, Osher B, DesRoches C. Is routine discharge enough? needs and perceptions regarding discharge and readmission of palliative care patients and caregivers. American Journal of Hospice and Palliative Medicine®. Published online January 5, 2025. doi:10.1177/10499091241311222

This study investigated the hospital discharge process for palliative care patients and their caregivers, focusing on its patient-centeredness, discharge readiness, and links to readmissions.

Diagnosis in the Era of Digital Health and Artificial Intelligence: Proceedings of a Workshop—in Brief

National Academies of Sciences, Engineering, and Medicine. 2024. Diagnosis in the Era of Digital Health and Artificial Intelligence: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/28571.

How might AI, digital health technologies, and open notes transform diagnosis while addressing health disparities? Read highlights from the National Academies Forum on Advancing Diagnostic Excellence.

Guidelines for Patient-Centered Documentation in the Era of Open Notes: A Qualitative Study

Vanka A, Johnston KT, Delbanco T, et al. Guidelines for Patient-Centered Documentation in the Era of Open Notes: A Qualitative Study. JMIR Medical Education. 23/11/2024:59301 (forthcoming/in press). DOI: 10.2196/59301

This study by Vanka, et al, presents 10 guidelines for patient-centered medical documentation, emphasizing respect, clarity, and inclusivity in clinical notes. These principles aim to empower patients, improve trust, and enhance medical education on open notes practices.

Clinician and patient perspectives on the exchange of sensitive social determinants of health information

DesRoches CM, Wachenheim D, Garcia A, et al. Clinician and patient perspectives on the exchange of sensitive social determinants of health information. JAMA Netw Open. 2024;7(10): e2444376

The findings of this study suggest that a multifaceted approach, taking both patients’ and clinicians’ concerns and preferences into account, is needed to improve the collection, documentation, and exchange of SDOH data to benefit both direct patient care and broader efforts at improving public health.

Study: Leveraging a patient portal to help patients formulate their healthcare goals

Naimark J, Tinetti ME, Delbanco T, Dong Z, Harcourt K, Esterson J, Charpentier P, Walker J. Leveraging an Electronic Health Record Patient Portal to Help Patients Formulate Their Health Care Goals: Mixed Methods Evaluation of Pilot Interventions. JMIR Form Res. 2024;8:e56332. doi: 10.2196/56332

This study tested self-directed tools for older adults with chronic conditions to identify healthcare priorities. Website engagement was low, but 26% completed an Epic previsit questionnaire. Most found it helpful, and physicians noted it facilitated end-of-life care discussions.

Shared access to adults’ patient portals: A secret shopper exercise

Wachenheim D, Hurwitz I, Dukhanin V, Wolff J, DesRoches CM. Shared access to adults’ patient portals: A secret shopper exercise. Applied Clinical Informatics. 2024

Our secret shopper exercise unveiled noteworthy variability in the experiences of 18 individuals attempting to grant or receive shared access to the patient portal, highlighting multiple barriers and facilitators to shared access. The findings underscore the imperative for cross- and intra-organizational collaboration aimed at learning from the diverse experiences of patients, care partners, clinicians, and staff, and disseminating best practices.

Overcoming systemic barriers to make patient-partnered research a reality

Venkataraman V, Martin-Giacalone BA, Drake BF, et al. Overcoming systemic barriers to make patient-partnered research a reality. Journal of Clinical Oncology. 2024

This commentary explores the barriers posed by processes of consent, data exchange, and EHR interoperability that hinder how researchers honor patients’ desires to contribute to the advancement of cancer research. To grow a thriving research ecosystem, we should minimize participants’ burden and develop systems that demonstrate our commitment and respect for their wishes to contribute to cancer research.

Gaps in the coordination of care for people living with dementia

Kern LM, Riffin C, Phongtankuel V, et al. Gaps in the coordination of care for people living with dementia. J Am Geriatr Soc. 2024; 1-10

This study examines care coordination breakdowns reported by patients living with dementia (PLWD) or their care partners. Interventions to improve communication across different care teams are needed to minimize the harmful effects of gaps in care coordination.

Patients need access to their medical records—now

Coulter A, Richards T, Giles C, Walker S. Patients need access to their medical records—now BMJ 2024; 386 :q1385

Despite initial professional resistance and policy delays, countries like Denmark, Estonia, Sweden, and the US have demonstrated that the benefits of full record access outweigh the risks. Patients globally are calling for interactive, user-friendly portals to access and correct their medical records, emphasizing that this is crucial for self-care, particularly in the post-pandemic era where healthcare access has declined.

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