Table 2 Themes and subthemes derived from analysis of interview data
Theme/ Subtheme | Quote |
|---|---|
BENEFITS OF SHARING MENTAL HEALTH DATA | |
1. Delivering improvements for others with mental illness | |
Determine Aetiology | “if in the future, we realise ‘hey there are some other signs and symptoms that perhaps are red flags or signals’” |
Improves Research Quality | “Where the research is strengthened by the data and where the study is strengthened by the data” |
“a lot of like statistical power…to pick out…if you have a particular er pre- pre- sort of disposition to developing something if you suffer from this illness” | |
Alleviate Suffering | “If there was a button I could push and take bipolar disorder away from the world I would. And, the only way we can do that is by letting people research the illness itself” |
“I don’t mind researchers having that information because I strongly believe in helping” | |
Subtheme 2: Improving treatment and management of mental health conditions | |
Personalised Medicine | “moving beyond a one size fits all approach” |
“way of better tailoring treatments to the patient, so … yeah. Something called personal treatment or personalised medicine” | |
Improves Services | “the NHS finally gets the funding it needs and deserves and that universal health care free at the point of need” |
“it might might do more to er, protect it [the NHS] into the future if people are seeing the benefits of that sort of centralised information and erm care” | |
“I do feel that the current em … sort of mental health service offerings are somewhat restrictive” | |
CONCERNS ABOUT SHARING MENTAL HEALTH DATA | |
Subtheme 3: Stigma | |
Researcher Stigma | “… I think there’s- there’s more danger in that, erm as in, you know you’re making a judgement rather than actually, erm, sort of asking the question of me myself” |
“dangerous world views on certain mental health issues …I can’t think of the right words but like a damaging world view, or personal view on certain mental health issues” | |
Healthcare Professional Stigma | “the term is “diagnostic overshadowing” but if if you go somewhere, I mean suppose I rocked up to A & E one evening complaining of dreadful stomach pains… if if it flashed up and said “well this person is a long term mental health service user”, that wouldn’t get taken seriously” |
Subtheme 4: Data misuse and data breaches | |
Private Sector | “I guess if there was personal data in there they could, you know er a random company could er contact you or, you know… maybe someone you know works in a company |
“scare mongering about in the future we might have a privatised NHS um insurance companies might get that kind of information, you might be excluded from reasonably priced insurance” | |
Public Domain | “If it got leaked to my ex-husband. And he went for sole custody of my daughter, that is the worst case scenario I could imagine” |
“the worst case possible, if my full NHS record was available online for anyone to download and read” | |
Employment | “employer discrimination I can see being a worry” |
“I think that information being shared with people like your employer without your consent…that kind of information wouldn’t be used to either … make somebody redundant or to put them through sanctions of some description or demotion or something like that” | |
SAFEGUARDS | |
Subtheme 5: Personnel | |
Need to Know | “Keeping the number of people that actually see it reduced to the people that actually need to see it” |
“well you know like researchers have access to the data they need and nothing more” | |
Accountability | “it would be known that they have seen it and therefore any issues could be tracked back to them” |
Subtheme 6: Practical Measures | |
Removal of Identifiable Information | “a separate identifier so there’s absolutely no need for, there’s no need for names” |
“all the information was anonymised and it couldn’t be traced back to… me” | |
Consent | “I think if information is going to get passed on, I would like to say yes or no…knowing that you can withdraw at any time …Em … and as far as possible I would like to give consent for those kinds of things on an individual, case by case basis” |
Data Storage | “how the data is stored and obviously there is GDPR rules and universities have their rules” |
“I think if my data could be used in a, a more secure way then I would be very happy with that” | |
“maybe you need a password to download it” | |
DATA TYPES | |
Subtheme 7: Useful Data | |
Qualitative Data | “People’s opinions on the service that they’ve received I suppose” |
“look at how doctors perceive different patients, different conditions, what ways are they talking about the patients” | |
Demographics | “It might help inform sort of realising that there is sort of major socio-economic issues in this particular health issue” |
Predictors and Outcomes | “things have got so bad that you know you’ve taken your own life. Erm, and try and- you know, the kind of things that have led up to that I guess, those are, pretty important” |
“I think trying to assess which kind of treatments work in what situation” | |
Subtheme 8: Sensitive Data | |
Social Media | “access to use social media stuff I think as well can be a bit personal” |
Genetics | “I guess if you have genetic material erm, or genetic information, and you’re looking for one thing and you find something else, erm, that can have an impact on someone’s life” |
Mental and Physical Health | “they are actually connected” |
“my physical health data isn’t anything like as personal” | |
“I think there needs to be more research looking at how they interact, physical and mental health” | |