{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T04:29:07Z","timestamp":1785558547409,"version":"3.56.0"},"reference-count":27,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Med Internet Res"],"abstract":"<jats:p>The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient\u2019s identity credentials\u2014a \u201cdo-it-yourself\u201d solution in conflict with a health systems\u2019 legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved\u2014patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.<\/jats:p>","DOI":"10.2196\/49394","type":"journal-article","created":{"date-parts":[[2024,4,30]],"date-time":"2024-04-30T22:09:05Z","timestamp":1714514945000},"page":"e49394","source":"Crossref","is-referenced-by-count":12,"title":["Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person\u2019s Care"],"prefix":"10.2196","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3798-7438","authenticated-orcid":false,"given":"Liz","family":"Salmi","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-8646-825X","authenticated-orcid":false,"given":"Danielle","family":"Peereboom","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2318-7261","authenticated-orcid":false,"given":"David A","family":"Dorr","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-7348-0299","authenticated-orcid":false,"given":"Leilani R","family":"Graham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7898-3903","authenticated-orcid":false,"given":"Jennifer L","family":"Wolff","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5373-855X","authenticated-orcid":false,"given":"Catherine M","family":"DesRoches","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2024,6,27]]},"reference":[{"key":"ref1","doi-asserted-by":"crossref","DOI":"10.17226\/23606","author":"Schulz, R","year":"2016","journal-title":"Families Caring for an Aging America"},{"key":"ref2","unstructured":"Coalition for Care Partners20232023-05-22Boston, MAOpenNotes &  Johns Hopkins Bloomberg School of Public Healthhttps:\/\/coalitionforcarepartners.org\/"},{"key":"ref3","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2018.05509"},{"key":"ref4","doi-asserted-by":"publisher","DOI":"10.1111\/jgs.16945"},{"key":"ref5","unstructured":"HenryJBarkerWKachayLThe Office of the National Coordinator for 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