How the NIHR is continuously improving research practice
Last week the NIHR announced that record numbers of people had taken part in health and social care research last year to develop life-saving treatments and improve patient care.
It is an incredible achievement. The result of much hard work and commitment from patients and carers, researchers, clinicians, clinical research nurses and NHS staff. People make research happen.
In the future we want to do more research. We want to give patients, carers and healthy volunteers more opportunities to take part in studies. But we can only do this by strengthening and improving what we do. An important part of this is listening to and learning from research participants about their experiences and understanding what made a difference to them.
For the last four years NIHR has conducted the Research Participant Experience Survey, an annual survey of the experiences of people who have taken part in health and social care studies. Our most recent survey in 2018/19 was the biggest yet, with over 8,000 research participants (or their carers) taking part. We were delighted that the vast majority (90%) of these patients said they had a good experience of taking part in research.
It is encouraging to know this and it is just as important to us, if not more so, than knowing we have boosted the overall numbers of people taking part in research. Because we know that people who have had a good experience will tell other patients, friends, neighbours and family - future research participants - about their positive experience.
Over the years we have learnt other valuable things from our survey: that the friendliness and professionalism of our research staff makes a huge difference to peoples’ experience; that providing the right information about studies is vitally important and; that being able to access research which is local to people can be a deciding factor not just in recruiting them, but to them staying in a study. While the instances of people having a bad experience are few, their feedback is just as essential to us too.
NIHR now uses the results from its annual PRES survey to measure its own performance year-on-year. At a national and local level we use the results to improve what we do in designing and delivering research. Knowing how important our staff are to patient experience means we can provide suitable training and support. Understanding accessibility issues helps us to work with study teams to design research that people can more easily take part in.
In the future we want to be able to ensure that every research participant has an opportunity to provide feedback. It is just one of the ways we can show how much we value their contribution to our work. Above all it is an important learning opportunity for us if we want to continue to be trusted by patients and the public.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.