Nicola Perrin, former Head of Understanding Patient Data, reflects on UPD’s beginnings and it's first two years. UPD’s evaluation report can be read here.
It is now almost six months since I stepped back from Understanding Patient Data, and it has been really rewarding watching it go from strength to strength. As UPD comes to the end of its initial funding and releases an evaluation about what it’s done over the past two years, now seems a good moment to reflect on the beginnings.
In the early summer of 2016, a group of funders agreed that “something needed to be done” to build trust in the use of patient data. We started with the idea of a “Taskforce”, on the basis that practical action was needed. However, we quickly realised that was the wrong approach – any solution needed to be inclusive, not top-down. Building on the model of Understanding Animal Research felt more appropriate – providing objective resources to help people make informed decisions, and bringing together a number of existing but often disparate engagement activities.
Understanding Patient Data formally launched in April 2017, to support better conversations about uses of health information. It is now really encouraging to see such positive findings from the first evaluation. I’m struck by the huge demand there is for UPD’s resources and advice, from such a wide range of stakeholders. And it is really satisfying to hear that UPD is finally giving people more confidence to talk about data.
So what has worked? Most obviously, producing simple and clear resources that are both accurate and accessible. I still love the simplicity of the website, which helps set the tone. The case studies have also been well used: real examples that help people explain why it’s so important to use data, whether for research or care.
Much of the success of UPD is the result of strong partnerships. Perhaps the best example is the brilliant (and double award winning!) Data Saves Lives animations. Thanks to superhuman effort by Philippa, more than 30 partners were involved in the development and dissemination of the series. The number of views – more than 1.5 million – exceeded all expectations.
UPD has undoubtedly benefited from having dedicated resource, light touch governance and flexibility, allowing us to respond quickly in a rapidly changing environment. And I was incredibly lucky to have invaluable advice from a very wise Steering Committee and Advisory Group - and, of course, an amazing and dedicated team.
Would I do anything differently? One thing I regret was that we did not have more staff. We kept very small as we got established, but it is clear that UPD could move much faster and further with more people. For example, I wish we could have done more with healthcare professionals – a key audience, but one that we found difficult to make headway with. Another area where I think there could be more focus is building champions: people who are willing to speak out to call for better use of data.
It was really encouraging to see the National Data opt-out land reasonably well, but it is just the start of a conversation. In some ways, the public debate is now even more complex. On the one hand, there is much more hype about exciting new uses of AI and the potential to transform diagnosis, but this is offset by an even greater awareness of the potential risks to privacy as society becomes ever more dependent on data.
There is clearly much more work to do. For example, I still don’t think there’s recognition of the dangers of NOT using data properly; how many lives have been lost because we’re not using data well.
One final reflection. Writing this, I realise what I miss most about UPD is the opportunity to work with so many incredible patients. You helped me understand the real value of “the patient voice”, while also being fun, pragmatic, humbling and inspirational. So thank you. It is patients that make the work of UPD worthwhile and remind us that #DataSavesLives is so much more than a hashtag.