Evidence map›Paper›PMID 33761938›Full record

ArticleBMC medical ethics2021

The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution.

Sarah Tosoni, Indu Voruganti, Katherine Lajkosz, Flavio Habal, Patricia Murphy, Rebecca K S Wong, Donald Willison, Carl Virtanen, Ann Heesters, Fei-Fei Liu

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
17citing papers in PubMed, 2 pooled it
5.7field-weighted citation impact, top 4% of its field
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

17 citing papers in PubMed, 2 syntheses or guidelines pooled it, 33 citations in OpenAlex.

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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

10 authors at 3 institutions in 1 country.

Sarah TosoniRadiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada.
Indu VorugantiRadiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada.
Katherine LajkoszDepartment of Biostatistics, Princess Margaret Cancer Centre, Toronto, ON, Canada.
Flavio HabalDepartment of Medicine, University Health Network, Toronto, ON, Canada.
Patricia MurphyDepartment of Anaesthesia, University Health Network, Toronto, ON, Canada.
Rebecca K S WongRadiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada.
Donald WillisonInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
Carl VirtanenUniversity Health Network Digital, Toronto, ON, Canada.
Ann HeestersDepartment of Bioethics, University Health Network, Toronto, ON, Canada.
Fei-Fei LiuRadiation Medicine Program, Princess Margaret Cancer Centre, Toronto, ON, Canada. Fei-Fei.Liu@rmp.uhn.ca.
University Health Network · CAPrincess Margaret Cancer Centre · CAUniversity of Toronto · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundImmense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences.

methodsPatients were invited to complete a 27-item survey focusing on: (a) broad versus specific consent; (b) opt-in versus opt-out approaches; (c) comfort level sharing with different recipients; (d) attitudes towards commercialization; and (e) options to track PHI use and study results.

results222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients (≤ 49 years) were more uncomfortable than older patients (50 + years; 13% versus 2% uncomfortable, p < 0.05). While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients (63%) preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients (≤ 49 years: 76%). Approximately half of patients were uncomfortable sharing PHI with commercial enterprises (51% uncomfortable, 27% comfortable, 22% neutral). Most patients preferred to track PHI usage (61%), with the highest proportion once again reported by the youngest patients (≤ 49 years: 71%). A majority of patients also wished to be notified regarding study results (70%).

conclusionsWhile most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research.

Indexed as

Artificial IntelligenceHealth Records, PersonalHumansInformed ConsentPatient PreferenceTrustConsent policiesData sharingPatient consent preferences

Identifiers

PMID33761938
PMCPMC7992944
OpenAlexW3138655902

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

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.