Data: A New Direction consultation roundtable discussion
The Government proposed changing Data legislation via it's Data: A New Direction consultation. The BIA held a roundtable discussion on 5 November to address chapter one “Reducing barriers to responsible innovation”.
Key points from discussion:
- Consent is not the recommended legal basis under GDPR for research, and therefore the proposed changes would not address barriers faced by those accessing health data for research, which is also subject to common law.
- The development of a cohesive and joined up approach to the use of health data in research should consider the law of confidentially.
- Any changes to UK GDPR should not take us out of step with the EU GDPR, in order to maintain data adequacy.
- The Government should further consider the process of anonymising health data for research and how this can be done in the patient’s best interest.
- Industry specific guidance is needed to address the use of genomic data and where this falls in terms of reidentification risk.
- The Government should be doing more to facilitate the creation of anonymised data by clarifying governance in this area.
- The Government should think about the governance of data intermediaries which hold valuable public data assets such as health data, in order to avoid oligopolies.