Dr Naho Yamazaki, Head of Policy and Engagement at the Health Research Authority, blogs on the importance of transparency and involvement with patients and the public in clinical trials and how the two go hand in hand
In March, we hit the amazing milestone of more than one million participants taking part in COVID-19 research across the UK. Many of these would have been clinical trials, including those that led to the discovery of therapies and the development of effective vaccines against COVID-19.
To coincide with this, the National Institute for Health Research (NIHR) and NHS launched the #ResearchVsCovid ‘thank you’ campaign, celebrating the combined efforts of participants, researchers and healthcare professionals in COVID-19 research. It was great to see people's contribution to research acknowledged in this way. Now is the time to remind all of us who carry out, or support research, about the importance of communicating the outcomes of clinical trials to participants.
The HRA published its strategy on research transparency, Make It Public, in summer last year. Informing participants of the outcome of research, throughout the study and at the end, is one of the key pillars of research transparency. When we were developing the strategy, many people we spoke to were really surprised to hear that participants often do not find out what happened to the research they took part in. We want to change this. It is vital if we want people to trust research and its outputs, and if we want ongoing participation in clinical trials. But along with thanking people, it is just the right thing to do.
We recognise that there are many challenges to doing this well, not least being able to find the right resources. The key is early planning that involves patients and the public, trying to find out at the start if, when and how participants want to hear the outcomes of research. But there isn't a one-size fits all approach that works for all the different types of research. So we are putting together examples of when things were done well, as a first step to providing support to researchers. In addition to giving practical hints and tips through this way, we are now planning the first of our annual research transparency conference where people can get together to share best practice examples and make connections for further information exchange.
If you have been involved in health and social care research and have a good example of transparency done well – including communicating your research outcomes - we’d love to hear about it. Get in touch on research.transprency@hra.nhs.uk
This blog is part of our series for International Clinical Trails Day, looking at transparency and the involvement of the public in clinical trials.
Find out more from:
Derek Stewart patient advocate Hon Professor NUI Galway – Seeing research – all the way through.