To be perfectly honest, the last thing I really wanted to be doing on my birthday was giving oral evidence to a parliamentary select committee. But that’s what I was doing last week, alongside HRA Chair, Professor Sir Terence Stephenson.
We’d been called to update the House of Commons Science and Technology Committee on our work to improve transparency in health and social care research, following the committee’s report published this time last year.
With the committee’s recommendations and our own analysis of the issues, we had a good idea of what needs to be done. But we knew that for our research transparency strategy to be effective, it needs to be shaped by the communities involved in research. So, we invited 12 wise people to help us produce a draft strategy.
The Research Transparency Strategy Group is made up of patients and professionals who, like I do, care deeply about the visibility of health and social care research. When we published the draft Make it Public strategy in June, it became clear very quickly that we are not the only ones. Over 700 patients, research participants, researchers, funders and sponsors gave us their views and told us about their experiences through our survey and our public workshops held around the UK. A quarter of those who took part were those with lived experience, giving us a strong sense of what patients and the public want and expect.
Alongside the Make it Public consultation, the HRA and others have worked to improve the reporting the results of clinical trials of medicines. The Science and Technology Committee, along with Sense and Science, who run the AllTrials campaign, have done a great job of reminding NHS and university sponsors of their reporting obligations under the Clinical Trials Directive and letting them know about their unreported trials. We have done the same with NHS sponsors across the UK. As Sense about Science reported to the committee, university and NHS sponsors have increased their reporting rates to the European Clinical Trials Register by a third.
This demonstrates that raising awareness and being clear about expectations makes a difference. Our Make it Public strategy consultation, the committee’s focus on this issue and the efforts of many others have reminded researchers what they must do and have made it uncomfortable for those who aren’t fulfilling their obligations.
Talking publicly about the importance of transparency and reminding individual sponsors to comply with requirements clearly helps. But it won’t get us all the way. To achieve transparency and openness across the board – from registration through to communicating results to research participants – we need transparency to become part of the day job.
Sir Terence and I were pleased to be able to describe how the Make it Public strategy, to be published in early 2020, aims to achieve that. All in all, it was a birthday well spent.