Head in the clouds or feet on the ground?

While COVID-19 news continues to dominate the headlines, the government is busy preparing its Data Strategy for Health and Social Care. This, it says, “will set the direction for the use of data in a post-pandemic healthcare system”.

This could be a good thing. Patient groups have long argued for better access to electronic health records. ‘Big data’ can be an effective driver for better understanding of diseases and treatments: the latest and best example is, of course, the testing and roll-out of the COVID-19 vaccines. Person-centred care should also be based on a thorough understanding of patient experience – and data from patient feedback can (if well managed) help with that.

At the same time, big data in healthcare is not without risk. This House of Commons Library report includes some lessons from recent history – not all of which inspire confidence in the state’s ability to safeguard personal health data. One example was the NHS investigation that found that none of the 80 NHS Trusts affected by the 2017 WannaCry ransomware attack had applied an advised Microsoft patch update.

The government’s understanding of the need to improve NHS data handling is evidenced by the setting up of NHSX whose job is to – guess what? – “transform” digital health and social care. Unfortunately, its website’s home page follows a very untransformed NHS tradition of being out of date, with news that it will be engaging on a tech plan for health and care throughout, er… Spring and Summer 2020.

To prepare the way for the new strategy, Dr Ben Goldacre is leading a review. The terms of reference, available here, do not seem overly patient-centred. The first point, for example, is “How do we facilitate access to NHS data by researchers, commissioners, and innovators…?” It does not mention facilitating access to NHS data for patients.

To be fair, the review invites “expert patient & public representatives” to a focus group on 19 March 2021. But it then shoots itself in the foot by requiring people seeking admission to “put your job title and org”.

Whatever happens with the strategy, patient experience, and patient voice need to be central. Patients are, after all, the source of the data. But much of their feedback – churned through the data mills of the Friends and Family Test and the national patient surveys – is incomprehensible to staff and patients alike. Repeated studies have shown that our “person-centred” healthcare system doesn’t really understand patient experience data.

A data strategy for health and social care could easily get carried away with the excitements of things like artificial intelligence and commercial data mining. It needs, however, to be grounded in the day to day reality of patient experience and person-centred care. Sorting out the long-standing muddle in patient experience data would be a good place to start.

(Note: The review welcomes written feedback via email to goldacrereview@dhsc.gov.uk.)