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Young people’s views about consenting to data linkage: findings from the PEARL qualitative study

Overview of attention for article published in BMC Medical Research Methodology, March 2016
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  • Good Attention Score compared to outputs of the same age (70th percentile)

Mentioned by

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7 tweeters

Citations

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28 Dimensions

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78 Mendeley
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Title
Young people’s views about consenting to data linkage: findings from the PEARL qualitative study
Published in
BMC Medical Research Methodology, March 2016
DOI 10.1186/s12874-016-0132-4
Pubmed ID
Authors

Suzanne Audrey, Lindsey Brown, Rona Campbell, Andy Boyd, John Macleod

Abstract

Electronic administrative data exist in several domains which, if linked, are potentially useful for research. However, benefits from data linkage should be considered alongside risks such as the threat to privacy. Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study. The Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. Qualitative research was incorporated in the PEARL study to examine participants' views about data linkage and inform approaches to information sharing. This paper focusses on issues of consent. Digitally recorded interviews were conducted with 55 participants aged 17-19 years. Terms and processes relating to consent, anonymization and data linkage were explained to interviewees. Scenarios were used to prompt consideration of linking different sources of data, and whether consent should be requested. Interview recordings were fully transcribed. Thematic analysis was undertaken using the Framework approach. Participant views on data linkage appeared to be most influenced by: considerations around the social sensitivity of the research question, and; the possibility of tangible health benefits in the public interest. Some participants appeared unsure about the effectiveness of anonymization, or did not always view effective anonymization as making consent unnecessary. This was related to notions of ownership of personal information and etiquette around asking permission for secondary use. Despite different consent procedures being explained, participants tended to equate consent with 'opt-in' consent through which participants are 'asked' if their data can be used for a specific study. Participants raising similar concerns came to differing conclusions about whether consent was needed. Views changed when presented with different scenarios, and were sometimes inconsistent. Findings from this study question the validity of 'informed consent' as a cornerstone of good governance, and the extent to which potential research participants understand different types of consent and what they are consenting, or not consenting, to. Pragmatic, imaginative and flexible approaches are needed if research using data linkage is to successfully realise its potential for public good without undermining public trust in the research process.

Twitter Demographics

The data shown below were collected from the profiles of 7 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 78 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 1 1%
Unknown 77 99%

Demographic breakdown

Readers by professional status Count As %
Researcher 20 26%
Student > Ph. D. Student 12 15%
Student > Master 12 15%
Student > Bachelor 4 5%
Student > Doctoral Student 3 4%
Other 10 13%
Unknown 17 22%
Readers by discipline Count As %
Medicine and Dentistry 14 18%
Psychology 9 12%
Social Sciences 8 10%
Computer Science 5 6%
Nursing and Health Professions 4 5%
Other 17 22%
Unknown 21 27%

Attention Score in Context

This research output has an Altmetric Attention Score of 5. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 05 May 2016.
All research outputs
#4,468,067
of 16,272,107 outputs
Outputs from BMC Medical Research Methodology
#710
of 1,534 outputs
Outputs of similar age
#77,949
of 268,133 outputs
Outputs of similar age from BMC Medical Research Methodology
#1
of 1 outputs
Altmetric has tracked 16,272,107 research outputs across all sources so far. This one has received more attention than most of these and is in the 72nd percentile.
So far Altmetric has tracked 1,534 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 9.7. This one has gotten more attention than average, scoring higher than 53% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 268,133 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 70% of its contemporaries.
We're also able to compare this research output to 1 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them