As pointed out in the article below, transformation of governance will be a key factor in determining the success of the proposed ‘Health Data Research Service’.
Some brief thoughts on ways in which the governance of health data for research purposes might be improved:
- Move away from use of abstract terms such as ‘gold standard’ to describe security and privacy measures. Such terms have no meaningful semantics. Additionally, they are likely to elicit different expectations for different parties and therefore cause misunderstandings. Focus is better placed on clearly articulating the security and privacy measures that are in place, and why they are necessary and sufficient in a particular context
- Harmonise the interpretation of legal frameworks and ethical principles applicable to use of health data for research purposes. Legal frameworks and ethical principles define abstract concepts and principles that must be interpreted and then operationalised in a given context. Variation in interpretation and operationalisation between the different organisations in the health data ecosystem is likely to be a source of misunderstanding and lead to ineffective and inefficient decision-making processes
- Develop people and processes to make and clearly articulate informed decisions based on balancing of different (and potentially conflicting) individual, organisational and societal interests. Effective and efficient decision-making processes in the governance of health data are constrained if people and organisations do not have the expertise to confidently make and articulate these inherently complex decisions
UK Government announcement available at: https://www.gov.uk/government/news/prime-minister-turbocharges-medical-research
Read the Lancet article at: https://www.thelancet.com/journals/landig/article/PIIS2589-7500(26)00017-8/fulltext