Dataset Information

Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey.

ABSTRACT:

Background

Routinely-collected mental health data could deliver novel insights for mental health research. However, patients' willingness to share their mental health data remains largely unknown. We investigated factors influencing likelihood of sharing these data for research purposes amongst people with and without experience of mental illness.

Methods

We collected responses from a diverse sample of UK National Health Service (NHS) users (n = 2187) of which about half (n = 1087) had lifetime experience of mental illness. Ordinal logistic regression was used to examine the influence of demographic factors, clinical service experience, and primary mental illness on willingness to share mental health data, contrasted against physical health data.

Results

There was a high level of willingness to share mental (89.7%) and physical (92.8%) health data for research purposes. Higher levels of satisfaction with the NHS were associated with greater willingness to share mental health data. Furthermore, people with personal experience of mental illness were more willing than those without to share mental health data, once the variable of NHS satisfaction had been controlled for. Of the mental illnesses recorded, people with depression, obsessive-compulsive disorder (OCD), personality disorder or bipolar disorder were significantly more likely to share their mental health data than people without mental illness.

Conclusions

These findings suggest that positive experiences of health services and personal experience of mental illness are associated with greater willingness to share mental health data. NHS satisfaction is a potentially modifiable factor that could foster public support for increased use of NHS mental health data in research.

SUBMITTER: Kirkham EJ

PROVIDER: S-EPMC8858475 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature

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Publications

Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey.

Kirkham E J EJ Lawrie S M SM Crompton C J CJ Iveson M H MH Jenkins N D ND Goerdten J J Beange I I Chan S W Y SWY McIntosh A A Fletcher-Watson S S

BMC public health 20220219 1

<h4>Background</h4>Routinely-collected mental health data could deliver novel insights for mental health research. However, patients' willingness to share their mental health data remains largely unknown. We investigated factors influencing likelihood of sharing these data for research purposes amongst people with and without experience of mental illness.<h4>Methods</h4>We collected responses from a diverse sample of UK National Health Service (NHS) users (n = 2187) of which about half (n = 1087 ...[more]

PMID: 35183146

Similar Datasets

Project description:BackgroundThe use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices.ObjectiveThis study aims to explore public attitudes in Australia toward sharing government health data with the private sector.MethodsA web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019.ResultsThe survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants' views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people's health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government's capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population.ConclusionsThis nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

Dataset Information

Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey.

Background

Methods

Results

Conclusions

Publications

Experience of clinical services shapes attitudes to mental health data sharing: findings from a UK-wide survey.

Similar Datasets

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