public perceptions of NHS data use
around privacy and not wanting to use the app”. Their report recognised that “building trust in data privacy was the biggest hurdle in NHS COVID-19 app adoption” 60.
Finally, it should perhaps go without saying that public engagement should be inclusive. There was very little in the literature about barriers and enablers for specific groups within society in respect of engagement on healthcare data – however, Healthwatch England have made a useful point about public engagement and carers: “Carers are often ‘forgotten’ because they are caring for someone and have also neglected the need to ‘opt-out’ if necessary” 58.
Worries about privacy have been noted elsewhere: "members of the public value opt-in consent and can perceive research without consent as an invasion of privacy” 61 . Such concerns influenced reactions to the Care.data scheme: “The chosen opt-out system was seen by some members of the public as unethical. The default system, which means that data will be extracted unless a patient explicitly rejects, caused much concern. The opt out system relies on everyone knowing about the scheme, being able to make an informed decision and being given the choice to opt-out if they so wish” 62.
Choice and control It may come as no surprise that “Perceived autonomy, or individual control over how data is used, was found to be a key factor shaping public responses”. Indeed, “Members of the public value having control over their own data. Participants explicitly referred to control over their own data in terms of individual or human rights. There was an evident link between levels of trust (in research organisations or data controllers) and desired level of individual control” 59.
For some people, privacy concerns are directly related to their own health conditions. For example, “When it comes to the use of social care services, mental health status and sexual health status, a low number of respondents reported being happy to share this information with health professionals and NHS services (39%, 38% and 34% respectively)” 63. Furthermore, “Minors & vulnerable people have special
A key driver for concerns over choice and control is the question of data privacy. This has been recognised by the Department for Health and Social Care: “The primary reason for not downloading the NHS COVID-19 app were concerns
58
Healthwatch England, 2015. Written evidence on Public Attitudes on Consent and Data Security for the National Data Guardian Review Team.
59
Aitken, M. et al., 2016. Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Medical Ethics.
60
Department for Health and Social Care, 2021. NHS COVID-19 app: early adopter evaluation report NHS Test and Trace programme.
61
Hill, E. et al., 2013. “Let’s get the best quality research we can”: public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study. BMC Medical Research Methodology
62
Healthwatch Essex 2014. Care.data: the debate. Summary report.
63
Healthwatch England, 2015. Written evidence on Public Attitudes on Consent and Data Security for the National Data Guardian Review Team.
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