The BMA has undertaken research into what the public think about the sharing of healthcare data for secondary purposes. As part of developing our vision for secondary uses of data, we contracted BritainThinks to run a workshop with the public.
We wanted to know more about public awareness and understanding of secondary uses of healthcare data, and what concerns the public have over the sharing of healthcare data for secondary purposes. We also wanted to know what people thought about the levels of consent appropriate in different scenarios.
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- Younger participants were more familiar with the concept of 'big data' than older participants, and older participants found it harder to understand how data might be used and what the benefits might be.
- Participants considered healthcare data to be more sensitive than other types of information.
- Secondary uses of healthcare data is not a primary issue for people, and people were only vaguely aware of how and why healthcare data might be used, or about current debates on the issue.
- Understanding was made more difficult by the complexity of the subject, and the unfamiliar language used, such as 'anonymous' and 'pseudonymous' data.
Benefits and concerns about secondary uses of healthcare data
- Participants were able to see the benefits for using their healthcare data for research, such as supporting research, improving care and improving public health.
- However, participants had little confidence in the safeguards in place to protect data, leading to serious worries about data security.
- Participants felt that there was a lack of accountability within the system, and malicious use of data by private companies (e.g. pharmaceutical and insurance) were a concern for many people.
Levels of consent
Participants identified six clear principles around the issue of consent:
- 'Implied consent' for direct care is accepted without question by all.
- The idea of giving an overarching consent for particular types of activity is accepted as a concept and generally positively viewed as an efficient means of gaining consent.
- Perceived sensitivity of data is the key factor to determining level of consent required.
- The more clearly someone understands why their data is needed and how it will be used, the more likely they are to give consent.
- The more removed a person feels from the data user, the higher the level of consent required.
- The more someone feels they have a vested interest in the outcome of the data sharing, the lower the level of consent required.
Four further factors influenced the level of consent that participants were willing to give:
- A lower level of consent was felt to be necessary if the person using the data is clinically trained.
- A lower level of consent was felt to be necessary if the data are being used within and by the NHS, which is seen as clearly distinct from other organisations.
- Participants were willing to accept a lower level of consent for medical research than for planning/commissioning services.
- A lower level of consent was felt to be necessary if data are being used at a local level.