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.

Views on sharing mental health data for research purposes: A qualitative study with people with mental illness

“…It is important to note that these comments were made in 2019, prior to the onset of the Covid-19 pandemic. This highlights that whilst the pandemic has increased the burden on mental health services (Lavis, 2022), these services were already struggling to meet people’s needs prior to the pandemic (Kirkham et al, 2022). Interestingly, previous research has shown that positive experiences of mental health services are associated with more positive attitudes to mental health data sharing (Kirkham et al, 2022).…”

“…Individuals who took part in a previous survey by our research team (which also focused on the topic of sharing mental health data; Kirkham et al, 2022) were asked to leave their email address if they wanted to take part in an interview. This list of email addresses was used to invite people to take part in the present interview study.…”

“…Whilst routinely-collected data are clearly beneficial for health research, they should only be used in a manner that is supported by those who provide such data, and whose clinical treatment will be shaped by derived insights (Carter et al, 2015). Previous work on this topic has found relatively high levels of public support for health data sharing (73 - 93% positive; Buckley et al, 2011; King et al, 2012; Kirkham et al, 2022; Luchenski et al, 2013). However, this support is somewhat conditional, such that individuals typically want their data to be handled by an organisation they trust and used for the public good rather than for profit (Aitken et al, 2016; Jones et al, 2022).…”

“…The extent to which people with mental illness agree with this perception of mental health data as especially sensitive, or how they feel more broadly about sharing mental health data, remains unclear (Shen, Sequeira, et al, 2019). This is because the views of people with mental illness are largely missing from literature on health data sharing (Kirkham et al, 2022; Shen, Sequeira, et al, 2019). For example, none of the 25 studies emerging from Aitken et al’s (2016) systematic literature review on health data sharing had explicitly recruited people with mental illness.…”

“…The small amount of prior research which has focused on the preferences of people with mental illness found that factors which influence willingness to share health data include their prior experiences with health care services (Kirkham et al, 2022; Shen, Bernier, et al, 2019; Soni et al, 2021), stigma and the perceived risk of discrimination (Grando et al, 2017), and, similar to the wider general public, their trust in the organisation accessing the data (Caine & Hanania, 2013). There is also early evidence to suggest that people with mental illness may actually be more willing than those without to share their health data for research purposes (Jones et al, 2022), at least once other factors such as lower overall satisfaction with healthcare have been accounted for (Kirkham et al, 2022). However, this finding is not universal (Soni et al, 2020).…”