Evidence map›Paper›PMID 36736697›Full record

ArticleValue in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research2023

US Residents' Preferences for Sharing of Electronic Health Record and Genetic Information: A Discrete Choice Experiment.

Abram L Wagner, Felicia Zhang, Kerry A Ryan, Eric Xing, Paige Nong, Sharon L R Kardia, Jodyn Platt

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

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

  1. Pooled it
  2. Article
  3. Article
  4. Article
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.

Abram L WagnerDepartment of Epidemiology, School of Public Health, University of Michigan, Ann Arbor, MI, USA. Electronic address: awag@umich.edu.
Felicia ZhangDepartment of Epidemiology, School of Public Health, University of Michigan, Ann Arbor, MI, USA.
Kerry A RyanCenter for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, USA.
Eric XingDepartment of Epidemiology, School of Public Health, University of Michigan, Ann Arbor, MI, USA.
Paige NongHealth Management and Policy, School of Public Health, University of Michigan, Ann Arbor, MI, USA.
Sharon L R KardiaDepartment of Epidemiology, School of Public Health, University of Michigan, Ann Arbor, MI, USA.
Jodyn PlattDepartment of Learning Health Sciences, Medical School, University of Michigan, Ann Arbor, MI, USA.

Funding

The Lifecycle of Health Data: Polices and PracticesR01CA214829 · NCI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI KARDIA, SHARON L, PLATT, JODYN ELIZABETH · 2018 to 2021
$2.4M
NCI NIH HHS R01 CA214829
6 · The paper itself

Abstract

objectivesThe aim to this study was to assess preferences for sharing of electronic health record (EHR) and genetic information separately and to examine whether there are different preferences for sharing these 2 types of information.

methodsUsing a population-based, nationally representative survey of the United States, we conducted a discrete choice experiment in which half of the subjects (N = 790) responded to questions about sharing of genetic information and the other half (N = 751) to questions about sharing of EHR information. Conditional logistic regression models assessed relative preferences across attribute levels of where patients learn about health information sharing, whether shared data are deidentified, whether data are commercialized, how long biospecimens are kept, and what the purpose of sharing the information is.

resultsIndividuals had strong preferences to share deidentified (vs identified) data (odds ratio [OR] 3.26, 95% confidence interval 2.68-3.96) and to be able to opt out of sharing information with commercial companies (OR 4.26, 95% confidence interval 3.42-5.30). There were no significant differences regarding how long biospecimens are kept or why the data are being shared. Individuals had a stronger preference for opting out of sharing genetic (OR 4.26) versus EHR information (OR 2.64) (P = .002).

conclusionsHospital systems and regulatory bodies should consider patient preferences for sharing of personal medical records or genetic information. For both genetic and EHR information, patients strongly prefer their data to be deidentified and to have the choice to opt out of sharing information with commercial companies.

Indexed as

ConfidentialityElectronic Health RecordsData CollectionHumansInformation DisseminationLogistic ModelsUnited Stateselectronic health recordsgenetic datainformation sharingprivacy

Identifiers

PMID36736697
PMCPMC10956475

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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.