Evidence map›Paper›PMID 42231813›Full record

ArticleJournal of empirical research on human research ethics : JERHRE2026

Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.

Nicola Howe, Thomas Chadwick, Dorothy Newbury-Birch, Elaine McColl

Abstract read
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In one paragraph

Article in Journal of empirical research on human research ethics : JERHRE, 2026. 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

4 authors.

Nicola HoweNIHR HealthTech Research Centre in Diagnostic and Technology Evaluation, Newcastle University, Newcastle upon Tyne, NE2 4HH, UK.ORCID 0000-0001-9446-8314
Thomas ChadwickPopulation Health Sciences, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, NE2 4AX, UK.
Dorothy Newbury-BirchSSSHL Department of Law, Policing and Investigation, Teesside University, Middlesbrough, TS1 3BX, UK.
Elaine McCollPopulation Health Sciences, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, NE2 4AX, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Most research funders and journals now require researchers to make their data available for sharing. There is a growing body of literature on research participants' attitudes towards health data sharing, but less evidence regarding views of participants taking part in longitudinal studies, clinical trials or public health research.1,664 respondents from the UK (participants in longitudinal studies ALSPAC and ACONF and members of Patient and Public Involvement (PPI) groups completed a questionnaire survey exploring attitudes towards data sharing, including consent and data storage. Respondents were most concerned about privacy and data security and highlighted concerns about open access and sharing with commercial organisations.

Indexed as

AttitudeInformation DisseminationPublic OpinionResearch SubjectsAccess to InformationAdultComputer SecurityConfidentialityFemaleHumansInformed ConsentLongitudinal StudiesMaleMiddle AgedPrivacySurveys and QuestionnairesALSPACData sharinginformed consentlongitudinal studyparticipantspatient perspectivesecondary use

Identifiers

PMID42231813
PMCPMC13554376

What OpenQuestion holds

Textmetadata
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.