Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context

Beange, Iona; Kirkham, Elizabeth; Fletcher‐Watson, Sue; Iveson, Matthew H.; Lawrie, Stephen M.; Batty, G. David; Boardman, James P.; Deary, Ian J.; Black, Corri; Porteous, David J.; McIntosh, Andrew M.

doi:10.12688/wellcomeopenres.15651.1

Cited by 4 publications

(1 citation statement)

References 12 publications

(2 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…At the same time, if one in ten people are unwilling to share mental health data, this could still present a significant obstacle that hinders progress towards increased availability of routine mental health data for research. Therefore researchers should not underestimate the importance of continued and sustained public engagement on the value of routine data analysis for research (21), especially since participants were less willing to share mental health data than physical health data. This reluctance signals that mental health data may be more "sensitive" than other health data (4-8), especially as it comes from participants who had already chosen to engage with mental health research.…”

Section: Discussionmentioning

confidence: 99%

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

Lawrie

et al. 2021

Preprint

Self Cite

View full text Add to dashboard Cite

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 experience of mental illness. Methods We collected responses from a population-representative UK sample of 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 effect of NHS satisfaction had been controlled for. Of the mental illnesses recorded, people with depression, anxiety, 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.

show abstract

Section: Discussionmentioning

confidence: 99%

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

Lawrie

et al. 2021

Preprint

Self Cite

View full text Add to dashboard Cite

show abstract

Public opinion on sharing data from UK health services for clinical and research purposes without explicit consent

Jones

Nelder

Fryer

et al. 2021

Preprint

View full text Add to dashboard Cite

BACKGROUND. In the UK, National Health Service (NHS/HSC) data is variably shared between healthcare organizations for direct care, and increasingly used in de-identified forms for research. Few large-scale studies have examined public opinion on sharing, including the treatment of mental health (MH) versus physical health (PH) data. METHODS. Pre-registered anonymous online survey open to all UK residents, recruiting Feb-Sep 2020. Participants were randomized to one of three framing statements regarding MH versus PH data. FINDINGS. Participants numbered 29275; 40% had experienced a MH condition. A majority supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with distance and was slightly less for MH than PH data, with a small framing effect. Preference for research/de-identified data sharing without explicit consent showed the same small PH/MH and framing effects, plus greater preference for sharing structured data than de-identified free text. There was net support for research sharing to the NHS, academic institutions, and national research charities, net ambivalence about sharing to profit-making companies researching treatments, and net opposition to sharing to other companies (similar to sharing publicly). De-identified linkage to non-health data was generally supported, except to data held by private companies. We report demographic influences on preference. A clear majority supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during the pandemic. INTERPRETATION. Support for healthcare data sharing for direct care without explicit consent is broad but not universal. There is net support for the sharing of de-identified data for research to the NHS, academia, and the charitable sector, but not the commercial sector. A single national NHS-hosted system for patients to control the use of their NHS data for clinical purposes and for research would have broad public support. FUNDING. MRC.

show abstract

Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK

et al. 2022

View full text Add to dashboard Cite

ObjectivesUK National Health Service/Health and Social Care (NHS/HSC) data are variably shared between healthcare organisations for direct care, and increasingly de-identified for research. Few large-scale studies have examined public opinion on sharing, including of mental health (MH) versus physical health (PH) data. We measured data sharing preferences.Design/setting/interventions/outcomesPre-registered anonymous online survey, measuring expressed preferences, recruiting February to September 2020. Participants were randomised to one of three framing statements regarding MH versus PH data.ParticipantsOpen to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition.ResultsMost (76%) supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with geographical distance and was slightly less for MH than PH data, with small framing effects. Preference for research/de-identified data sharing without explicit consent showed the same small PH/MH and framing effects, plus greater preference for sharing structured data than de-identified free text. There was net support for research sharing to the NHS, academic institutions, and national research charities, net ambivalence about sharing to profit-making companies researching treatments, and net opposition to sharing to other companies (similar to sharing publicly). De-identified linkage to non-health data was generally supported, except to data held by private companies. We report demographic influences on preference. A majority (89%) supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during COVID-19.ConclusionsSupport for healthcare data sharing for direct care without explicit consent is broad but not universal. There is net support for the sharing of de-identified data for research to the NHS, academia, and the charitable sector, but not the commercial sector. A single national NHS-hosted system for patients to control the use of their NHS data for clinical purposes and for research would have broad support.Trial registration numberISRCTN37444142.

show abstract

Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context

Cited by 4 publications

References 12 publications

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

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

Public opinion on sharing data from UK health services for clinical and research purposes without explicit consent

Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK

Contact Info

Product

Resources

About