Evidence map›Paper›PMID 30345387›Full record

ArticleWellcome open research2018

The destruction of the 'Windrush' disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research.

Andy Boyd, Matthew Woollard, John Macleod, Alison Park

Abstract read
In one paragraph

Article in Wellcome open research, 2018. 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.

Andy BoydALSPAC, University of Bristol, Bristol, BS8 2BN, UK.ORCID https://orcid.org/0000-0002-8614-3728
Matthew WoollardUK Data Archive, University of Essex, Colchester, CO4 3SQ, UK.ORCID https://orcid.org/0000-0002-1077-4312
John MacleodPopulation Health Science, University of Bristol, Bristol, BS8 2BN, UK.
Alison ParkCLOSER, UCL Institute of Education, London, WC1H 0NU, UK.ORCID https://orcid.org/0000-0001-5650-3852

Funding

Medical Research Council MC_PC_17210Wellcome Trust
6 · The paper itself

Abstract

Historical records and the research databases of completed studies have the potential either to establish new research studies or to inform follow-up studies assessing long-term health and social outcomes. Yet, such records are at risk of destruction resulting from misconceptions about data protection legislation and research ethics. The recent destruction of the Windrush disembarkation cards, which potentially could have formed the basis of a retrospective cohort study, illustrates this risk. As organisations across Europe transition to the EU General Data Protection Regulation (GDPR), this risk is being amplified due to uncertainty as to how to comply with complex new rules, and the requirement under GDPR that data owners catalogue their data and set data retention and destruction rules. The combination of these factors suggests there is a new meaningful risk that scientifically important historical records will be destroyed, despite the fact that GDPR provides a clear legal basis to hold historical records and to repurpose them for research for the public good. This letter describes this risk; details the legal basis enabling the retention and repurposing of these data; makes recommendations as to how to alleviate this risk; and finally encourages the research and research-active clinical community to contact their 'Data Protection Officers' to promote safe-keeping of historical records.

Indexed as

data protectiondata repurposedata retentionfollow-upGDPRresearch archiveretrospective cohort studyWindrush.

Identifiers

PMID30345387
PMCPMC6171557

What OpenQuestion holds

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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.