Simon Denegri: Is a better public debate about patient data on the horizon?

Few would argue that the public have been well served by the debate about how their data can support care and research now and in the future. After the shipwreck of in 2014, efforts to communicate with the public have stalled. Indecision about the best way forward has gripped the medical research and healthcare community, and attempts to bring the discussion into the public arena have barely caused a ripple. This, despite shortening rations and a sense that time may be running out. But help, at last, may be on the horizon.

Last week leading figures from healthcare organisations, research funders and institutions, industry, and medical research charities gathered for the launch of “Understanding Patient Data.” A collaborative initiative spearheaded by the Wellcome Trust after last year’s National Data Guardian’s report called for “a fuller conversation about how data is used in the NHS,” Understanding Patient Data aims “to support discussions with the public, patients, and healthcare professionals about uses of health and care data.”

Understanding Patient Data promises to tackle a number of the key barriers to public understanding. It aims to do so by gathering objective evidence on the benefits and risks of using patient data (some of which can be seen here), developing resources and tools that others can use easily, and using insights into public attitudes gained through public dialogue and other exercises. It also boldly aspires to take an innovative and inclusive approach to carrying out this dialogue, and I was impressed by the first example of this, which was shared at the launch event: a comprehensive piece of work looking at the language that we use about data.

As in so many other areas of science and medicine, jargon and the dominance of technical terms have become a barbed wire that snags us all. The research commissioned by Understanding Patient Data points to the need to simplify and clarify: we need to avoid terms like “direct care” or “secondary uses of data,” which mean nothing outside of a professional context. “Individual care” works best to describe the use of data for a person’s own care and treatment; “patient’ is preferred to “consumer,” “user,” or “citizen”; and (sorry editor) it’s okay to say “data is . . . ” Phew! I am glad that we have got that out of the way. Best of all though are the images that have been developed to communicate levels of identifiability in data—from personally identifiable to anonymised. A picture is worth a thousand words.

This sort of work will be helpful in grounding future conversations about patient data in terms that we can all understand. It got a positive reception at the meeting. Yet it was also interesting to observe how some in the audience—which was largely made up of those who frankly live and breathe patient data as an issue—found it difficult to let go of technical language and to sacrifice specificity for the purposes of mutual understanding and public interest. It just goes to prove that those closest to a subject are not always its best advocates.

The work on language bodes well for some of the other initiatives that Understanding Patient Data has in mind. These include developing and supporting advocates who will champion the responsible use of data, sharing examples of involvement and engagement initiatives and the learning from them, and thinking ahead about new and emerging technologies and the challenges they present. At the launch event we had an opportunity to think about and feed back into these ideas in working groups. It will be absolutely crucial for future initiatives to be developed in the same inclusive manner—with the public involved at every step.

Will Understanding Patient Data make a difference? As we have seen, probably its biggest test will be to challenge the healthcare and research community to think, behave, and communicate differently. If it can do this, and also co-design with patients, health professionals, and researchers new and helpful approaches to aid understanding, then a more open and constructive discussion with the public may be in sight.

It can draw strength from having a solid platform (in the Wellcome Trust) from which to work and the backing of the Medical Research Council, Department of Health, Economic and Social Research Council, and Public Health England. But healthcare organisations, research funders and institutions, charities, and patient groups will need to get behind it. Even the most sceptical among them must realise that there aren’t many other ships likely to appear on the horizon.

For me personally, it’s the first time that I have felt positive about the prospect of a better public discussion about data for a while. Maybe, just maybe, the issue won’t be marooned for that much longer.

Simon Denegri is the national director for patients and the public in research at the National Institute for Health Research (NIHR) and the chair of INVOLVE. He is a member of the advisory group for Understanding Patient Data.

Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: NIHR national director for patients and the public in research; chair of INVOLVE; employee of University College London, School of Life and Medical Sciences; member of the Understanding Patient Data advisory group (unpaid); member of the Office for Strategic Co-ordination of Health Research (OSCHR) subgroup on data (unpaid); and former member of the programme board (unpaid).