Evidence map›Paper›PMID 42281764›Full record

ArticleJournal of the Society for Clinical Data Management2023

A Privacy Nihilist Perspective on Clinical Data Sharing: Open Clinical Data Sharing is Dead, Long Live the Walled Garden.

Justin Starren, Luke V Rasmussen, Daniel H Schneider, Prasanth Nannapaneni, Kelly Michelson

Abstract read
In one paragraph

Article in Journal of the Society for Clinical Data Management, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

5 authors.

Justin StarrenNorthwestern University Feinberg School of Medicine.
Luke V RasmussenNorthwestern University Feinberg School of Medicine.
Daniel H SchneiderNorthwestern University Feinberg School of Medicine.
Prasanth NannapaneniNorthwestern University Feinberg School of Medicine.
Kelly MichelsonNorthwestern University Feinberg School of Medicine.

Funding

Northwestern University Clinical and Translational Science Institute (NUCATS)UL1TR001422 · NCATS · NORTHWESTERN UNIVERSITY AT CHICAGO · PI D'AQUILA, RICHARD · 2015 to 2023
$56.8M
Technology CoreU19AI135964 · NIAID · NORTHWESTERN UNIVERSITY AT CHICAGO · PI JUSTIN B. STARREN · 2018 to 2026
$24.7M
Hemostasis, Hematoma Expansion, and Outcomes After Intracerebral HemorrhageR01NS110779 · NINDS · NORTHWESTERN UNIVERSITY AT CHICAGO · PI NAIDECH, ANDREW M · 2019 to 2023
$3.3M
NCATS NIH HHS UL1 TR001422NIAID NIH HHS U19 AI135964NINDS NIH HHS R01 NS110779
6 · The paper itself

Abstract

Clinical data sharing, combined with deep learning, and soon quantum computing, has the potential to radically accelerate research, improve health care, and lower costs. Unfortunately, those tools also make it much easier to use the data in ways that can harm patients. This article will argue that the vast amounts of data collected by data brokers, combined with advances in computing, have made reidentification a serious risk for any clinical data that is shared openly. The new National Institute of Health data sharing policy acknowledges this new reality by directing researchers to consider controlled access for any individual-level data. The clinical data sharing community would be well-advised to follow the lead of the physics and astronomy communities and create a "walled garden" approach to data sharing. While the investment will be significant, this approach provides a more optimal combination of both access and privacy. Some design considerations for walled gardens are discussed. The article concludes with a list of recommended actions that can be taken by individuals and institutions today.

Identifiers

PMID42281764
PMCPMC13251810

What OpenQuestion holds

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LicenceTDM
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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.