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Record W4383426483 · doi:10.7202/1101129ar

Online Therapeutic Portals for Sharing Health Research: Comparative Guidance amid Regulatory Uncertainty

2023· article· en· W4383426483 on OpenAlex
Michael Lang, Ma’n H. Zawati

Why this work is in the frame

A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.

affAt least one author lists a Canadian institution in the pinned OpenAlex snapshot.
fundA Canadian funder is recorded on the work.
venuePublished in a venue whose home country is Canada.
aboutThe title or abstract carries a Canadian signal from the geographic lexicon.

Bibliographic record

VenueCanadian Journal of Bioethics · 2023
Typearticle
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsMcGill University
FundersGénome Québec
KeywordsInternet privacyTransparency (behavior)ConfidentialityPatient portalBusinessThe InternetKnowledge managementHealth careEquity (law)EmpowermentPublic relationsContext (archaeology)Computer scienceWorld Wide WebPolitical scienceComputer security

Abstract

fetched live from OpenAlex

Online resources offer a uniquely efficient way of sharing health research with scientists and the public. Using web portals to make results and study information available to diverse audiences could work to accelerate research translation and empower patients to play a more active role in their care. But using online tools to broadly share health information raises several challenging ethical and regulatory questions. Issues such as equity, privacy, and patient empowerment may create challenges for regulators, portal developers, as well as researchers. It is additionally unclear whether web portals designed to facilitate access to research results and general health information will be regulated as medical devices under emerging regimes that control software with medical purposes. This paper aims to comparatively address whether online therapeutic portals for sharing health research are likely to be regulated in Canada, the United States, the United Kingdom, and France. We find that though these jurisdictions have each taken recent steps to regulate software as medical devices, the applicable regimes will generally not capture online portals for sharing health research. Though online portals for sharing health research are probably unregulated in many (if not most) jurisdictions, agencies have nevertheless signalled their concerns regarding several important ethical considerations (such as equity, transparency, and safety), to which portal developers and researchers should be attentive and respond. We describe here one set of issues highlighted by regulators – that is, efficiency, equity, transparency, confidentiality, communication, empowerment, training, and safety & efficacy – and consider how to best guide the design of online portals in a context of regulatory uncertainty.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.033
metaresearch head score (Gemma)0.017
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch, Research integrity
Consensus categoriesMetaresearch
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Theoretical or conceptual · Consensus signal: Theoretical or conceptual
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.439
Threshold uncertainty score0.997

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0330.017
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0010.001
Science and technology studies0.0010.002
Scholarly communication0.0000.000
Open science0.0010.000
Research integrity0.0000.005
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.907
GPT teacher head0.673
Teacher spread0.234 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it