Participant in Research Experience Survey (PRES)

Participant in Research Experience Survey (PRES)

27.09.2022

What is the Participant in Research Experience Survey (PRES)

The Participant in Research Experience Survey, abbreviated to PRES, is a set of questions from the National Institute for Health and Care Research (NIHR) Clinical Research Network (CRN) to allow participants in research to give their feedback on their experience. The results from these surveys are used nationally, across region and at the trust to improve the way research studies are designed and delivered. More information about PRES can be found at Participant in Research Experience Survey (PRES) | NIHR

PRES is important as it shows that we value our research participants’ views, ensures we can improve our services and ensures we are doing the best for our participants.

Who took part?

We aim to send PRES to all our participants in research. Medway NHS Foundation Trust had 168 responses to PRES in financial year 2021/22 (April 2021-March 2022). In the same financial year, we recruited 4667 people to research studies, which is a response rate of 3.6%. Most of these responses were from participants that had taken part in a research study in cancer (56.76%). The responses were from a mixture of participants that had been on trials less than 3 months (24.39%) or three years or longer (44.51%). Most of the respondents were of White British ethnicity (87.27%).

What we found

Below is a summary of the results from the survey for Medway NHS Foundation Trust.

Participants felt

  • Updated about their study (57.4%)
  • They were not sure how they’d receive results (No 35.19% Yes to some extent 36.42% Yes 28.40%)
  • Knew how to contact the team (77.16%)
  • Felt valued (83.23%) and treated with courtesy and respect (94.48%)
  • Prepared for the research study (86%)
  • They would take part in research again (87.7%)

What we have done or are going to do

The feedback from our participants is always valued and we know from the results of 2021/22 that we can improve in areas. Only 3.6% of those that participated in a research study completed the PRES. We are looking at why this was the case. Within the research team we are making sure every participant is sent a PRES after initial participation and then again yearly whilst still on the study. This will hopefully result in answers covering more variety in specialist areas rather than the majority being from one area (cancer in 2021/22).

By sending every participant a PRES, we are hoping that it will ensure a wider age of responses as well. Most of the responses were from those born before 1972 (74%). This could be a reflection of our participants and we will also look at whether we need to do more to get younger people to participate in research in the first instance.

A similar issue is in the mixture of ethnicities of those that responded to the PRES in 2021/22. 87.27% of responses were from those who identified as White British. By increasing our response rate, we may have a different picture. We will also be looking at whether other ethnicities are taking part in our research studies and if not, why.

One of the main issues raised was that results were not shared. Only 28.4% responded “Yes” to the question “I know how I will receive the results of research” with 35.19% saying “No” and 36.42% saying “Yes, to some extent”. Most of the answers to the question “What would have made your research experience better?” were related to not receiving feedback about the research study. We have recently launched our own website and are adding results from studies to the “News” page. We are also inviting particpants to become Research Friends where they will receive a quarterly newsletter with information about results of our research studies. The new PRES form also includes a section where the respondent can enter their details if they would like to receive the results of the research study they have participated in directly. Hopefully this will improve the sharing of results.

We will continue to value every participant in our research studies and treat them with courtesy and respect which falls in line with the values of Medway NHS Foundation Trust. 86% of our participants that responded felt they were prepared for their experience, although this is a good percentage, we would like to improve this by ensuring our consent process is more thorough. As a research department, we have recently conducted an audit looking at our consenting process and will continue to monitor and improve this area.

It is promising to see that 87.7% of responders would take part in research again.

We would like to thank every person that took part in research and those that took the time to complete the PRES.

Quotes:

“To be honest I was feeling bad but the doctors spoke to my wife and explained things to her which helped us as a family which I really appreciate.” Survey Respondent 2021/22

“By taking part in this research I continue to receive mammograms on a two yearly basis. Which would not have happened without taking part in the research. Also I hope whatever the finding are will help other people.” Survey Respondent 2021/22