Is the data strategy a missed opportunity to build trust in how data is used?

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After months of anticipation, in late June 2021, the government published the draft of its national data strategy. The document outlines how the government intends to use the vast range of data in the NHS and social care to improve health and care for patients and staffs. This could mean changes so that patients no longer need to repeat their histories to different staff and staff having all relevant information to hand, saving time and improving safety.

If this strategy is to succeed then the government needs to work hard to gain the trust of both citizens and staff around transparency of data use

The one thing that can’t be disputed is the level of ambition in the strategy, which spans a huge range of issues including research, new privacy-protection approaches, and spurring on digital innovation. However, governments don’t have a great track record when it comes to data initiatives – remember the National Programme for IT and care.data to GDPR which came undone due to a rushed deployment schedule with inadequate engagement for the scale of data-sharing. If this strategy is to succeed then the government needs to work hard to gain the trust of both citizens and staff around transparency of data use, how it is valued fairly to benefit the system and accessible citizen control.

Therefore, it is heartening to see the first of the three priorities of the strategy is:

…to build understanding on how data is used and the potential for data-driven innovation, improving transparency so the public has control of how we are using their data

However, having read the strategy I’m struck that while there are commitments to improving understanding and transparency – the first two issues in this priority – there’s none around giving citizens actual control over their data. We appear to have a situation where staff and the public don't trust the government with their health and care data while the government doesn't trust staff and the public to share data in a way that ensures both accessibility and control.

a better way to build trust and mitigate missteps would be listening to communities and making the changes to alleviate concerns

So gaining citizens’ and staff’s trust and being transparent are central to the success of the strategy, but with only four weeks to review and feedback on the strategy, it begs the question: how is the government proposing to engage and involve citizens in developing this strategy? The answer is: that’s not clear. The commitments on creating understanding and improving transparency fall back on a broadcast approach, whereas a better way to build trust and mitigate missteps would be listening to communities and making the changes to alleviate concerns. Another missing component of the strategy is ongoing co-development, which would create a good understanding of people’s concerns and expectations on transparency and trust – and would mean the strategy could be adjusted accordingly. The government could learn from citizens deliberation activities and vaccine hesitancy work to build lasting communication channels into communities. This would change the top-down approaches that have hampered data and digital strategies in the past to an approach in which the government listens and reacts to the concerns of community groups, which builds trust to use their data which, in turn, will improve data quality.

If trust and transparency are prioritised above all else, this data strategy would give the health and care system in England an opportunity to be the global leader in using data to improve how care is delivered and organised to improve staff and patient experiences and patient outcomes. To do this requires commitments to do things differently. The government needs to:

  • build ongoing trust by openly listening and engaging with people and communities, and adapting as a result, using a cyclical approach to implementation to identify and address concerns
  • build trust across seldom-heard demographic groups for higher-quality and complete data, which is essential for addressing inequalities, creating unbiased AI, and use in population health
  • ensure accessibility, transparency and co-development in approaching how staff and citizens value data so commercial use is not viewed as profiting from a publicly funded system
  • explore the potential for innovative ways of providing accessible patient control of data such as improvements to the opt out and data trusts.

If the government is to achieve its ambitions around data, it’s essential it moves away from the top-down and broadcast approaches which focus on activities not outcomes; they have not worked in the past. Accessible transparency can mean different things to different people, to quote Douglas Adams in The hitchhiker's guide to the galaxy:

But the plans were on display...

On display? I eventually had to go down to the cellar to find them.

That's the display department.

With a flashlight.

Ah, well, the lights had probably done.

So had the stairs.

But look, you found the notice, didn't you?

Yes, said Arthur, yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying 'Beware of the Leopard'.

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