The government recently released their new data strategy for health and care, “Data saves lives: reshaping health and social care with data”. We covered the strategy at HTN; click here to read our overview, or here to read industry views we curated.
Now, the National Data Guardian Dr Nicola Byrne has shared her views on the strategy, exploring whether it is “a blueprint for the evolution of a trustworthy data system, and whether it provides for all of the conditions that must be met in order to create an environment in which innovation can flourish.”
“Our ability to successfully achieve better things through data and digital hinges on the strength of the relationships that will deliver this change”
To begin, Dr Byrne notes that, having emphasised the importance of public trust in an earlier draft, she was pleased to see it take focus in the published version. “People need to know that the government understands just how unique this highly private information is – and that as such, commitments will be needed to demonstrate how confidentiality will be protected and respected.”
In addition, Byrne appreciated the strategy’s acknowledgement that it must do better to rebuild and strengthen people’s trust following the GP Data for Planning and Research programme. In order to achieve this, Byrne recommends thinking of the data landscape in terms of Maslow’s hierarchy of need, visualising needs as a layered pyramid with basic requirements at the bottom and successive layers built on top. “What are the conditions that must be satisfied before our health and care ecosystem can reach full maturity in terms of its trustworthiness to patients and professionals alike?” Byrne asks. “And does what the strategy is proposing sufficiently meet them?”
Byrne makes recommendations for the conditions required to meet these needs:
- Legal compliance: to earn trust organisations must “do more than not break the law”, Byrne says: “whilst lawful data use is a necessary foundation, it is insufficient alone.”
- Strong privacy protections: “maintaining confidentiality is essential for people to feel able to share information… in particular, the shift towards data access in secure data environments (SDEs) and away from routine disseminations is a significant development and a move that I strongly support.” Byrne recommends that interested parties read the Goldacre review and adds, “It is important that the government gets the governance wrapper and accreditation framework right for SDEs so that standards and safeguards are consistent, and what is in place as the ‘gold standard’ in the national SDE is scalable and achievable elsewhere.”
- A commitment to transparency: organisations should prioritise “good public engagement and dialogue – providing people with clear, accessible information about who will be accessing their data and why, the safeguards that are in place and what choices they have about it.” Byrne comments that she was pleased to see the strategy makes pledges to provide clear information, including how people can opt out of sharing. “I have also been asked to feed into work on the data pact, which the strategy says will ‘set out how we will use health and care data and what the public has the right to expect’. As a product that will set the scene for the public in terms of their data, we need to get this right.”
- Establishing and demonstrating public benefit: society’s familiarity with data’s benefits “does not mean that an enduring trust can be presumed,” Byrne stresses. “Trust is context and use-case specific. The likely public benefit of any new data use needs to be established. This must include demonstrating credible, authentic engagement with potential risks and their mitigations, as well as the exciting opportunities from data use.” There must also be clarity about the role of third-party data access, she notes; “it is important to be clear about who may benefit from any data use in addition to the public, whether that is a commercial company or an academic institution – and also why that may be necessary and justifiable.”
- Ensuring appropriate mechanisms for choice: the complexity of public sector organisations and systems can lead to the rights, agency and experience of individuals becoming “lost”, Byrne comments. “In this context, actively maintaining individual choice regarding how data about them is used is an important ethical safeguard. It was reassuring, therefore, to see opt-out, which was absent from the draft strategy, now included in it… Opt-out choices need to be clear, coherent, simple to action and – perhaps most importantly – authentic.”
- Sharing power with the public: it is important to be self-reflective about how power is exercised and experienced. “I was very struck by the repeated use of the word power in the data strategy,” Byrne says, “but what does a mature exercise of power look like? It is demonstrated by a system confident enough to genuinely engage, listen and respond to what it hears, and strong enough to think how power can be meaningfully shared. This has to involve independent scrutiny and challenge, and public involvement in decision-making.” She adds that she was pleased by the strategy’s commitment to undertake public engagement, and the commitment to a statutory safe haven for health and care data in the NHS, where data access decisions will be open to independent scrutiny. “These are good examples of how systems can improve and strengthen trust by being open to challenge.”
“Determining the nature and intent of any legislative changes concerning identifiable data will be critical”
Concluding her review, Byrne comments that she hopes the strategy’s “ambitious delivery timescales” are achievable.
With a need for detail to be worked into the plan to deliver the strategy, “it is important to move at pace where this is practical and achievable, but some things will take time to get right, and I think working with the public, and working out how best to involve and engage them, is one of those things. Equally, determining the nature and intent of any legislative changes concerning identifiable data will also be critical.”