Evidence map›Paper›PMID 30389654›Full record

ArticleJournal of medical Internet research2018

Insights Into Older Adult Patient Concerns Around the Caregiver Proxy Portal Use: Qualitative Interview Study.

Celine Latulipe, Sara A Quandt, Kathryn Altizer Melius, Alain Bertoni, David P Miller, Douglas Smith, Thomas A Arcury

Abstract read
In one paragraph

Article in Journal of medical Internet research, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
42citing papers in PubMed, 2 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

42 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Patient Portal Use Among Older Adults: A Systematic Review and Meta-Analysis.Proceedings. IEEE International Conference on Healthcare Informatics · 2026
    Article
  4. More Older Adults Try Patient Portals in Recent Years, but Many Don't Continue: A Meta-Analysis.Extended abstracts on Human factors in computing systems. CHI Conference · 2026
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  12. Care Partner Perspectives on the Use of a Patient Portal Intervention to Promote Care Partner Identification in Dementia Care.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2025
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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

7 authors.

Celine LatulipeDepartment of Software and Information Systems, University of North Carolina at Charlotte, Charlotte, NC, United States.ORCID 0000-0002-2132-0092
Sara A QuandtDepartment of Epidemiology and Prevention, Division of Public Health Sciences, Wake Forest School of Medicine, Winston-Salem, NC, United States.ORCID 0000-0002-2968-5459
Kathryn Altizer MeliusDepartment of Epidemiology and Prevention, Division of Public Health Sciences, Wake Forest School of Medicine, Winston-Salem, NC, United States.ORCID 0000-0002-7858-5032
Alain BertoniDepartment of Epidemiology and Prevention, Division of Public Health Sciences, Department of Internal Medicine, Wake Forest School of Medicine, Winston-Salem, NC, United States.ORCID 0000-0002-7503-6273
David P MillerDepartment of Internal Medicine, Wake Forest School of Medicine, Winston-Salem, NC, United States.ORCID 0000-0001-7879-4427
Douglas SmithGreene County Health Care, Inc, Snow Hill, NC, United States.ORCID 0000-0001-5216-4531
Thomas A ArcuryDepartment of Family and Community Medicine, Wake Forest School of Medicine, Winston-Salem, NC, United States.ORCID 0000-0001-9523-9492

Funding

Maximizing the Impact of ePHIM in Low-Income, Multiethnic PopulationsR01HS021679 · AHRQ · WAKE FOREST UNIVERSITY HEALTH SCIENCES · PI BERTONI, ALAIN GERALD · 2013 to 2017
$2.1M
AHRQ HHS R01 HS021679
6 · The paper itself

Abstract

backgroundElectronic patient portals have become common and offer many potential benefits for patients' self-management of health care. These benefits could be especially important for older adult patients dealing with significant chronic illness, many of whom have caregivers, such as a spouse, adult child, or other family member or friend, who help with health care management. Patient portals commonly contain large amounts of personal information, including diagnoses, health histories, medications, specialist appointments, lab results, and billing and insurance information. Some health care systems provide proxy accounts for caregivers to access a portal on behalf of a patient. It is not well known how much and in what way caregivers are using patient portals on behalf of patients and whether patients see any information disclosure risks associated with such access.

objectiveThe objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers.

methodsWe conducted semistructured interviews with 10 older adult patients with chronic illness. We asked them about their relationship with their caregivers, their use of their patient portal, their caregiver's use of the portal, and their perceptions about the benefits and risks of their caregiver's use of the portals. We also asked them about their comfort level with caregivers having access to information about a hypothetical diagnosis of a stigmatized condition. Two investigators conducted a thematic analysis of the qualitative data.

resultsAll patients identified caregivers. Some had given caregivers access to their portals, in all cases by sharing log-in credentials, rather than by setting up an official proxy account. Patients generally saw benefits in their caregivers having access to the information and functions provided by the portal. Patients generally reported that they would be uncomfortable with caregivers learning of stigmatized conditions and also with caregivers (except spouses) accessing financial billing information.

conclusionsPatients share their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but are unaware of all the information those caregivers can access. Better portal design could alleviate these unwanted information disclosures.

Indexed as

Qualitative ResearchCaregiversDisclosureFemaleHumansMaleMiddle AgedPatient PortalsPatientscaregiverspatient portalsproxyproxy portal accessproxy portal accounts

Identifiers

PMID30389654
PMCPMC6240158

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Registered trials

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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.