Evidence map›Paper›PMID 38935963›Full record

ArticleJournal of medical Internet research2024

Patient Portals Fail to Collect Structured Information About Who Else is Involved in a Person's Care.

Liz Salmi, Danielle Peereboom, David A Dorr, Leilani R Graham, Jennifer L Wolff, Catherine M DesRoches

Abstract read
In one paragraph

Article in Journal of medical Internet research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Article
  5. A look at caregivers for community-living persons with dementia: Implications for the GUIDE model.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
  6. Article
  7. Review
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Liz SalmiDepartment of General Medicine, Beth Israel Deaconess Medical Center, Boston, MA, United States.ORCID 0000-0003-3798-7438
Danielle PeereboomDepartment of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States.ORCID 0009-0004-8646-825X
David A DorrDepartment of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, Portland, OR, United States.ORCID 0000-0003-2318-7261
Jennifer L WolffDepartment of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States.ORCID 0000-0002-7898-3903
Catherine M DesRochesDepartment of General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States.ORCID 0000-0001-5373-855X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

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's identity credentials-a "do-it-yourself" solution in conflict with a health systems' 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-patients, 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.

Indexed as

Patient PortalsCaregiversElectronic Health RecordsHumansPatient Participationcaregiverscare partnerselectronic health recordshealth ITpatient portalsportal delegatesproxy accessshared access

Identifiers

PMID38935963
PMCPMC11240061

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.