Executive Group Chair Richard Stephens writes about the Cancer Research UK upSMART conference
Along with two others from our Executive Group, I was invited to represent use MY data and to co-Chair sessions at Cancer Research UK's (CRUK) UpSMART Digital Clinical Trials Conference in Manchester (19-20 November 2024).
The upSMART project is an interesting idea. It is a multi-national collaboration linking some of the CRUK-funded ECMCs (Experimental Cancer Medicine Centres) in the UK with institutions in Belgium, Italy, France and Spain, together with industry, who are providing some of the tech being used in the trials (especially apps) as well as running their own studies. Some of the sessions were fascinating - not only different regulations between Europe and the UK but also differences in quality standards between nations there and here, and of course it all becomes even more complex when the requirements of USA regulators and assessors are considered.
Where we’re in agreement about consent for data use
One of the most striking things to me was how much agreement there is about our consent for data use. Patients, academics, clinicians and industry alike were all clear that data consent should be for three things: (a) using data for the particular trial, (b) for future research use, and (c) for linkage to participants' routine health data. The wording to use remains problematic (often because different research ethics committees require different things, yet another layer of regulation for researchers to navigate). As well, the various bodies working towards standardisation are rarely talking to each other - certainly not (yet) Europe and the UK, sadly - especially on the point of "future research use" - by whom and for what and who makes that decision?
Including patients
One of our use MY data reps suggested that this is why you need a patient on every data access committee helping to make such decisions, a view that was greeted enthusiastically by the audience, but which later provoked more discussion - who chooses such reps, who trains them and above all perhaps, to whom are they accountable, especially in multi-national research projects using data from different jurisdictions?
Should we be thinking more about “USE” my data rather than “use MY data”?
It is all interesting and challenging, and it is one of the reasons I enjoy attending such conferences. However, it did strike me that in principle these are very similar discussions to those that are taking place between the four UK nations, between GPs and the NHS, between Trusts within the NHS, and of course between use MY data and anyone who wants to have a conversation with us. So now that the Sudlow Report is out and states openly that not using data is holding back research, and our fellow patient Wes Streeting wants the NHS to go digital and make more use of data, I wonder if as a patient-led movement we should now be thinking more about “USE” my data rather than “use MY data”, and what we can do as individuals with our GPs and NHS Trusts to help it happen. Indeed, what are our Members doing?
Tell us what you think
I go to conferences, wave my arms around and shout at people, but I wonder what others are doing? Please drop Elizabeth (elizabeth@usemydata.org.uk) a few lines to let her know.
Richard Stephens
Executive Group Chair
November 2024
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