'Everything about the research study has been positive. I have at all times been given all the information I need and have been treated with professionalism, courtesy, and warmth.’ Neurology trial participant, PRES 18/19
In 2018, we took part in the NIHR Patient Research Experience Survey (PRES) for the first time, to gather feedback from patients who take part in our studies and to learn what works best for them, so we can make helpful changes in the way undertake our research in the future.
The research engagement and diffusion team coordinated the delivery of the PRES, which involved research staff conducting studies across a number of medical specialties, including; cardiovascular research at St. Bartholomew's Hospital, The Clinical Research Centre at The Royal London Hospital, The Clinical Research Unit at Whipps Cross, and stroke, diabetes and children’s health research across our sites.
Neeta Patel, Associate Director explained: “When we were first approached by the Clinical Research Network: North Thames about delivering PRES to our research patients, we didn’t hesitate to say yes. Patient feedback helps us to better understand what is important to patients taking part in our studies and, in turn, helps us to make improvements, where they are likely to have the greatest impact. We want patients taking part in research at Barts Health to have the very best experience possible and the PRES can help us to achieve this.”
You can read the Results from the 2018 PRES here [PDF 691KB] and below are some of the things we have learnt so far:
Patients are interested to learn the results of studies they’ve taken part in.
In response to feedback received from patients taking part in diabetes research at The Royal London Hospital, the team are making changes to the ways they disseminate research outcomes to trial participants. They want to ensure that every person who has participated in a study is given the results of the research study that they took part in. The team will also display study results on the Barts Health website, on posters around the hospitals and in GP practices and through social media, where appropriate.
Many patients did not know that research was taking place in their local Barts Health hospital before they were first offered the opportunity to take part in a study.
The Barts Health Clinical Research Facility staff at Whipps Cross and The Royal London Hospital are working to raise the general visibility of research by displaying banners, posters and flyers about different studies in hospital clinics and corridors.
Staff conducting stroke research across the trust will be working to improve the way they share information about research with their colleagues so that all members of a patient’s direct care team will have the confidence to engage with their patients about taking part in a study.
‘I believe my participation in this study will benefit future patients with similar health problems.’ Renal trial participant, PRES 18/19
Patient Research Experience Survey 2019
If you are conducting an NIHR Portfolio study, you can take part in the PRES. The survey will run from 16 September until 20 December 2019.
With over 17,500 patients taking part in NIHR Portfolio research at Barts Health last year, the PRES offers an invaluable opportunity to gather useful feedback from our trial patients, to help identify positive patient experiences and highlight areas for service development and improvement in the research process.
If you haven’t already registered your participation, please contact the PRES leads via email: firstname.lastname@example.org