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Determining data sharing and number of publications coming from research databases that have been given a favourable opinion by UK research ethics committees

Determining data sharing and number of publications coming from research databases that have been given a favourable opinion by UK research ethics committees
Determining data sharing and number of publications coming from research databases that have been given a favourable opinion by UK research ethics committees
Objective To determine data sharing and number of publications coming from research databases that have been given a favourable opinion by UK National Health Service (NHS) Research Ethics Committees (RECs). Design Cohort study. Inclusion criteria & setting All research databases listed on the UK Health Research Authority’s Assessment Review Portal (HARP) that had received a favourable ethics opinion as of January 2018. Main outcome measures Publications and data access requests are either listed on HARP or notified through subsequent email correspondence. Results Out of 354 eligible databases, 34% had granted access requests and 40% had produced at least one peer-reviewed paper or conference abstract/talk. We could not establish contact with 9% of databases, and 19% reported no access requests or publications. Only 9% of databases were up to date with all annual reports. Email responses from database owners showed a range of attitudes towards data sharing. Conclusion Less than half of research databases that have received a favourable opinion from NHS research ethics committees share their data and produce publications. There is also considerable variability in the operation of research databases and understanding of the purpose of research databases. This work was hampered by incomplete records due mainly to researchers not submitting annual reports.
audit, ethics (see medical ethics), information management, qualitative research, statistics & research methods
2044-6055
1-8
Trace, Samantha
2add2dda-0d34-45ea-bb7e-d7c7baa12916
Bracher, Michael
e9e2fbd6-af5f-4f6e-8357-969aaf51c52e
Kolstoe, Simon
8f852355-b141-4504-84f0-3925095f8228
Trace, Samantha
2add2dda-0d34-45ea-bb7e-d7c7baa12916
Bracher, Michael
e9e2fbd6-af5f-4f6e-8357-969aaf51c52e
Kolstoe, Simon
8f852355-b141-4504-84f0-3925095f8228

Trace, Samantha, Bracher, Michael and Kolstoe, Simon (2020) Determining data sharing and number of publications coming from research databases that have been given a favourable opinion by UK research ethics committees. BMJ Open, 10 (9), 1-8, [e039756]. (doi:10.1136/bmjopen-2020-039756).

Record type: Article

Abstract

Objective To determine data sharing and number of publications coming from research databases that have been given a favourable opinion by UK National Health Service (NHS) Research Ethics Committees (RECs). Design Cohort study. Inclusion criteria & setting All research databases listed on the UK Health Research Authority’s Assessment Review Portal (HARP) that had received a favourable ethics opinion as of January 2018. Main outcome measures Publications and data access requests are either listed on HARP or notified through subsequent email correspondence. Results Out of 354 eligible databases, 34% had granted access requests and 40% had produced at least one peer-reviewed paper or conference abstract/talk. We could not establish contact with 9% of databases, and 19% reported no access requests or publications. Only 9% of databases were up to date with all annual reports. Email responses from database owners showed a range of attitudes towards data sharing. Conclusion Less than half of research databases that have received a favourable opinion from NHS research ethics committees share their data and produce publications. There is also considerable variability in the operation of research databases and understanding of the purpose of research databases. This work was hampered by incomplete records due mainly to researchers not submitting annual reports.

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Determining data sharing and number of publications coming from research databases that have been given a favourable opinion by UK research ethics committees - Accepted Manuscript
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Accepted/In Press date: 25 August 2020
e-pub ahead of print date: 30 September 2020
Keywords: audit, ethics (see medical ethics), information management, qualitative research, statistics & research methods

Identifiers

Local EPrints ID: 443876
URI: http://eprints.soton.ac.uk/id/eprint/443876
ISSN: 2044-6055
PURE UUID: afcf81dc-c63e-495e-83dd-1b97b4ab7693
ORCID for Michael Bracher: ORCID iD orcid.org/0000-0001-5861-2657

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Date deposited: 15 Sep 2020 16:34
Last modified: 26 Nov 2021 05:39

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Author: Samantha Trace
Author: Michael Bracher ORCID iD
Author: Simon Kolstoe

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