Hannah Chalmers, Policy and Public Affairs Lead at National Voices, writes about a recent workshop on patient data.

Engaging with data

Being the data nerd of the office is hard. You can definitely feel people’s eyes slowly glaze over when you start talking about the pitfalls of AI algorithms. Add in the fact that most engagement with data at the moment is a long list of to-do’s under the heading “getting ready for GDPR” and it’s not surprising that enthusiasm starts to drop.

And to be honest I don’t blame them; data is confusing. It has a language all of its own and unless someone sits down and translates it for you, it can be really difficult to interpret.

This is why when UPD approached National Voices and asked us to work together on a Health Data Summit, we jumped at the chance. UPD’s approach of breaking down the data debate into bite-sized digestible chunks is crucial to raising mass awareness of how patient data is used and the upcoming national data opt-out.

National Voices has over 140 charity members of different sizes all united to push for greater person-centred care. Many of our members fund or commission medical research, as well as advocating for high quality planning and commissioning. All of these issues are affected by sharing patient data and the opt-out.

Data: the next big thing in health?

At the Summit, my colleague Don Redding (Director of Policy and joint office data nerd) opened the panel of speakers and introduced the day. He said that if data is not the next big thing in health it’s because it is already the current big thing. He also explained that the event is an attempt to broaden the conversation about health data amongst a wider community.

Next Kuldeep Sohal from Connected Yorkshire gave a litany of examples of how our data is being used by researchers to improve the delivery of NHS care. From finding bottlenecks and duplications in patient journeys to improving diagnostics and predicting population health outcomes. Kuldeep set the tone and brought to life some of the potentials that patient data has.

Joanne Bailey then spoke about the role of the National Data Guardian. As a trained GP, she was able to provide some depth on the challenge of encouraging trust in the health and care system. After all, if people don’t trust the NHS they might not seek the care they need.

Tim Magor from NHS Digital was able to confirm what we all suspected; in general people don’t know what happens to their data. And despite learning that there are over 57,000 parts of the NHS each with its own network of data flows, Tim’s team are working on delivering the national data opt-out and what the public wants - clearer explanations and a simplified process.

Our final speaker was Nicola Perrin from UPD. She talked about the concerns many have with commercial companies accessing data. We’ve all been on the internet and seen some spookily specific targeted adverts pop up, so it was reassuring to know there are protections in place to stop the sharing of patient data solely for commercial reasons.

What’s the role of the voluntary sector in responsible data sharing?

After a Q&A with the panel, delegates had a workshop where we discussed the role of National Voices and the voluntary sector in moving the data debate forward. The general feeling from the room was that patient data is valuable and vulnerable; the voluntary sector should be encouraging that it is handled with care. Delegates agreed that the sector is well positioned to educate on the benefits of data sharing in research and improving health outcomes for all, but it can also encourage responsible use of data by the government and the health system.

This message in particular hit home with National Voices and I’m pleased to announce that I now work in an office filled with data nerds! We agreed after the summit that there is work we can do to promote good data governance and have therefore been working with one of our members, the National Aids Trust, on the Memorandum of Understanding between NHS Digital and the Home Office.

What’s next?

This summit has galvanised us to call on the government and its arm’s length bodies to act in a trustworthy manner with our data. UPD has many examples of how when data sharing is done well, we can all reap the benefits. However, it’s important that those who look after patient data, keep it secure and don’t become relaxed on sharing it. Our data is precious and, in the run-up to 25th May when the national data opt-out will become available, National Voices is working with our members and partners to make sure that this message is spread far and wide.

Find out more

If you are interested in National Voices and our work on patient data for person-centred care, please contact Hannah on hannah.chalmers@nationalvoices.org.uk