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Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

Overview of attention for article published in BMC Medical Ethics, November 2016
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About this Attention Score

  • In the top 5% of all research outputs scored by Altmetric
  • Among the highest-scoring outputs from this source (#11 of 664)
  • High Attention Score compared to outputs of the same age (96th percentile)
  • High Attention Score compared to outputs of the same age and source (97th percentile)

Mentioned by

news
6 news outlets
blogs
1 blog
policy
1 policy source
twitter
44 tweeters
facebook
2 Facebook pages

Citations

dimensions_citation
77 Dimensions

Readers on

mendeley
151 Mendeley
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Title
Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies
Published in
BMC Medical Ethics, November 2016
DOI 10.1186/s12910-016-0153-x
Pubmed ID
Authors

Mhairi Aitken, Jenna de St. Jorre, Claudia Pagliari, Ruth Jepson, Sarah Cunningham-Burley

Abstract

The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses as well as important areas for further research. This paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates). The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews. Key themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general-though conditional-support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised (e.g. relating to confidentiality, individuals' control over their data, uses and abuses of data and potential harms arising) in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data. Whilst the results indicate widespread (conditional) public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy.

Twitter Demographics

The data shown below were collected from the profiles of 44 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 151 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 151 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 29 19%
Student > Ph. D. Student 28 19%
Student > Master 20 13%
Student > Doctoral Student 9 6%
Student > Postgraduate 9 6%
Other 29 19%
Unknown 27 18%
Readers by discipline Count As %
Social Sciences 36 24%
Medicine and Dentistry 31 21%
Psychology 10 7%
Nursing and Health Professions 8 5%
Computer Science 8 5%
Other 22 15%
Unknown 36 24%

Attention Score in Context

This research output has an Altmetric Attention Score of 80. 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 10 October 2019.
All research outputs
#255,035
of 15,147,251 outputs
Outputs from BMC Medical Ethics
#11
of 664 outputs
Outputs of similar age
#9,573
of 290,384 outputs
Outputs of similar age from BMC Medical Ethics
#2
of 67 outputs
Altmetric has tracked 15,147,251 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 98th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 664 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 14.6. This one has done particularly well, scoring higher than 98% 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 290,384 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 96% of its contemporaries.
We're also able to compare this research output to 67 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 97% of its contemporaries.