The government’s new Data Saves Lives is a blueprint for the evolution of a trustworthy data ecosystem. The strategy outlines that to tackle this, it will: keep data safe and secure.
Be open about how data is used. ensure fair terms from data partnerships What are the conditions that must be met before our data ecosystem can reach full maturity?
And does what the strategy is proposing sufficiently meet them?
I would suggest that in parallel, those conditions are: legal compliance.
The shift towards data access in secure data environments (SDEs) and away from routine disseminations is a move that I strongly support.
A commitment to transparency establishing and demonstrating public benefit Transparency is the next condition to be met for good public engagement and dialogue.
Establishing and demonstrating public benefit of any new data use needs to be established.
The plan for rebuilding public trust will be a pivotal deliverable that I am keen to get into the detail of.
When it comes to public benefit, transparency remains key.
There must be clarity about the role of third-party data access, including by profit-making commercial companies.
I hope to see this framework evolve in a way that will support better conversations with the public about the value of data and what ‘fair’ terms for the NHS might look like in practice.
Also of note here is the reference in the strategy to the Centre for Improving Data Collaboration’s work on a value-sharing framework to support good data partnerships.
Sharing authority with the people
Finally, I would suggest that in order for any organization or system to fully mature, it must be able to reflect on how power is used and experienced by both those who work for it and those who use its services.
The data strategy’s frequent usage of the word “power” really caught my attention.
But what is a responsible use of power?
It is exemplified by a system powerful enough to consider how power may be usefully shared, and self-assured enough to engage, listen, and respond to what it hears. Public participation in decision-making, independent review, and challenge are required.
I was therefore happy to see the plan make a commitment to engaging the public in-depthly, especially by collaborating with underrepresented groups, to think about policy issues like the delivery of SDEs and the future of opt-outs.
In NHS England, where data access decisions will be subject to independent review,
I was also pleased to see the commitment to a statutory safe haven for health and care data.
I was also pleased to see the commitment to the strategy’s draft SDE guidelines, which state that “secure data environments must ensure that patients and the public are actively involved in the decision-making processes to build trust in how their data is used.”
These are excellent illustrations of how systems can increase and strengthen trust by being willing to face obstacles.
There is a lot to be gained here from the experience and knowledge inside current independent groups such as the Confidentiality Advisory Group and the Independent Group Advising on the Release of Data (IGARD) (CAG).
If effectively carried out, these pledges will show system maturity in action by converting words about power into significant deeds.
Several closing remarks
I hope that some of the strategy’s pledges can be completed by their extremely aggressive delivery dates. Many details surrounding many of the pledges still need to be sorted out as the strategy now moves into delivery.
This entails a sizable commitment to interact with the public in order to foster trust. Moving at a sensible and achievable speed is crucial, but some things will take time to do right.
Working with the public and figuring out the best ways to involve and engage them is one of those things, in my opinion. Equally important will be understanding the nature and purpose of any law changes pertaining to identifiable data.
Being NDG at this moment is exciting. My panel and I are optimistic about the direction the strategy is taking, and we look forward to helping everyone who is working hard to enhance health, care, and treatment outcomes and experiences by making better use of one of our nation’s most priceless resources: our health and care data.
