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

Abstract

AbstractBackgroundImproved data sharing could have extensive benefits for mental health research and treatment. However, it is vital that data are shared in a way that aligns with the views of people with mental health conditions. Whilst previous research has examined public views of health data sharing, few studies have focused specifically on people with mental illness.MethodsSemi-structured online interviews were conducted with twelve people with a range mental health conditions, including schizophrenia, anxiety, depression, eating disorder and addiction. Interview questions focussed on the risks and benefits of sharing mental health data, how data should be kept safe, and the sensitivity of different types of data.ResultsThe overarching themes identified were: benefits of sharing mental health data, concerns about sharing mental health data, safeguards, and data types. There was a high level of support for the use of data sharing to facilitate improved knowledge of and treatment for mental health conditions. Concerns included the potential for misuse of data, such as by insurance companies or employers, and the risk of mental health stigma from researchers and healthcare professionals who accessed the data. There was a focus on appropriate safeguards, such as secure storage access procedures.ConclusionsThere was a strong sense across participants that more should be done to combat the suffering caused by mental illness, and that appropriate health data sharing could facilitate this. The mental health research community could build on this generally positive attitude to mental health data sharing by ensuring that they follow rigorous best practice which accounts for the specific concerns of people with mental illness.