Evidence map›Paper›PMID 34007881›Full record

ArticleInternational journal of population data science2020

Guidance for researchers wanting to link NHS data using non-consent approaches: a thematic analysis of feedback from the Health Research Authority Confidentiality Advisory Group.

Lauren Cross, Lauren Emma Carson, Amelia Jewell, Margaret Heslin, David Osborn, Johnny Downs, Robert Stewart

Open access · goldAbstract read
In one paragraph

Article in International journal of population data science, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
0.7field-weighted citation impact, top 25% of its field
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

2 citing papers in PubMed, 5 citations in OpenAlex.

  1. Article
  2. 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 at 3 institutions in 1 country.

Lauren CrossDepartment of Psychological Medicine, King's College London, Strand, London WC2R 2LS, UK.
Lauren Emma CarsonDepartment of Psychological Medicine, King's College London, Strand, London WC2R 2LS, UK.
Amelia JewellSouth London and Maudsley NHS Foundation Trust, National Institute for Health Research (NIHR), Maudsley Biomedical Research Centre, Denmark Hill, London, SE5 8AF, UK.
Margaret HeslinDepartment of Health Services & Population Research, King's College London, Strand, London WC2R 2LS, UK.
David OsbornDivision of Psychiatry, University College London, Maple House, 149 Tottenham Court Rd, Bloomsbury, London W1T 7BN, UK.
Johnny DownsDepartment of Psychological Medicine, King's College London, Strand, London WC2R 2LS, UK.
Robert StewartDepartment of Psychological Medicine, King's College London, Strand, London WC2R 2LS, UK.
King's College London · GBRichmond upon Thames College · GBSouth London and Maudsley NHS Foundation Trust · GB

Funding

Department of Health CS-2018-18-ST2-014Medical Research Council MC_PC_17214Medical Research Council MR/L017105/1Medical Research Council MR/T045302/1
6 · The paper itself

Abstract

introductionThe use of linked data and non-consent methodologies is a rapidly growing area of health research due to the increasing detail, availability and scope of routinely collected electronic health records data. However, gaining the necessary legal and governance approvals to undertake data linkage is a complex process in England.

objectivesWe reflect on our own experience of establishing lawful basis for data linkage through Section 251 approval, with the intention to build a knowledgebase of practical advice for future applicants.

methodsThematic analysis was conducted on a corpus of Section 251 feedback reports from the NHS Health Research Authority Confidentiality Advisory Group.

resultsFour themes emerged from the feedback. These were: (a) Patient and Public Involvement, (b) Establishing Rationale, (c) Data maintenance and contingency, and the need to gain (d) Further Permissions from external authorities prior to full approval.

conclusionsSecuring Section 251 approval poses ethical, practical and governance challenges. However, through a comprehensive, planned approach Section 251 approval is possible, enabling researchers to unlock the potential of linked data for the purposes of health research.

Indexed as

data linkagenon-consent approachessection 251thematic analysis

Identifiers

PMID34007881
PMCPMC8110887
OpenAlexW3090359135

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.