Record number of research participation and excellent participant experience in Yorkshire and Humber
An unprecedented year
A record number of people from Yorkshire and Humber participated in research for 2021 against the backdrop of the Covid-19 pandemic, the worst public health emergency in a hundred years.
170,082 participants took part in NIHR-supported research delivered across the region from April 2020 to March 2021 - an increase of over 90,000 on the previous year’s participants (70,905).
Professor Alistair Hall, Clinical Director of the NIHR Clinical Research Network Yorkshire and Humber, praises the Yorkshire and Humber region for its valuable and vast effort, stating
“I am very, very proud of the citizens of Yorkshire and Humber for their willingness to partner in research that has done so much to help end the current global health, economic and social crisis. Thank you to these noble individuals who have been true leaders in this regard. Also to the many who will volunteer to be part of research in the future."
The participants’ experience
As part of the NIHR CRN Yorkshire and Humber's PPIE team's annual improvement plan, there was a drive to collect research participant's feedback and action their suggestions. This manifested as the implementation of and the promotion of the Patient Research Experience Survey (PRES).
The results of PRES were collected from 86% of our partner organisations, gathering 2,487 replies.
High satisfaction rates
The PRES results were overwhelmingly positive:
- 97% of participants felt that they had been treated with respect and courtesy
- 95% of participants would consider participating again in research
- 94% of participants felt that the information received helped their preparations
- 93% of respondents felt that their participation in research was valued
- 92% of participants responded positively that they know how to contact the research team if needed
- 78% of participants felt that they know if they will receive the results of the research
- 76% of respondents felt they had been kept up to date by the R&D team
Not only was there a high number of participants, it was clear that participants had an outstanding experience.
Here is what some of our participants had to say:
"At all times the research was explained to me thoroughly. The medication I was offered had with no obligation. The staff were wonderful, very caring and understanding. Thank you".
"It was a great opportunity to ask about my own condition and to get more insightful information".
"All the staff involved were excellent. In particular I felt my research nurse went above and beyond to help me, as did my doctor. Every step of the way they were all there for me".
"I am glad that I am able to make some contribution to help towards a solution to the pandemic".
Areas for improvement
PRES did underline some key areas for improvement:
- 21% of participants did not feel that they will receive the results of the research
- 4% of respondents did not feel that they have been kept updated about the research
- 4% of respondents did not know how to contact the research team
In 2021/22, we will be working with our partners to ensure that the areas for improvement outlined in PRES are addressed.
Example: how PRES was used to enhance participants’ and staff’s experience
The NIHR CRF at Sheffield Teaching Hospitals NHS Foundation Trust adopted PRES during their Covid-19 vaccination trials, to inform and enhance staff and participant experience for future vaccine trials.
PRES underlined the excellent experience and quality care received delivered by the Sheffield team:
- 90% agreed or strongly agreed that researchers valued their participation (9% were neutral).
- 98% stated that they were treated with courtesy and respect.
The feedback gathered from PRES influenced later Covid-19 vaccination studies.
Frequent issues that were raised were:
- Long waiting times and needed refreshments.
- Long waiting times and wanted longer with Researchers and Healthcare Professionals
- Unsure of which site to attend and where to park
- 60% submitted PRES on paper
In response to the issues raised the following changes were made:
- Bottled water provided to participants.
- Reduced patient flow to 2 an hour to 4 an hour.
- Future studies based solely at Northern General Site, which has P&D parking.
- Indicated that digital and paper versions of PRES must be provided.
Patients and staff had an improved experience of later studies
Staff found the patient feedback in the PRES helped them to make improvements and also gave them a much needed morale boost. Staff noted that the busy vaccination clinics had a steadier pace in subsequent trials, because of the changes made as a response to PRES findings.
Katy Shortland Operations Manager for the NIHR Sheffield Clinical Research Facility:
"PRES was able to offer a huge boost to our staff at a time of unprecedented challenge and change when they could see that participants were having a positive experience when visiting the Clinical Research Facility (CRF)".
In the second PRES survey, there were less references to clinic waiting times and parking issues.
For more detail on the use of PRES, head to our case study on NIHR Sheffield Clinical Research Facility’s use of PRES.
If you would like to participate in a study, head to the Be Part of Research website, where you can find recruiting trials taking place in your area.