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Case study: Survey of Covid-19 vaccine research participants shapes future vaccine studies

Insight gained through Patient Research Experience Survey (PRES) responses from vaccine study participants has proved invaluable to the success of subsequent Covid-19 studies and could inform future vaccine studies.

Supported by the LCRN Yorkshire and Humber's Patient and Public Involvement and Engagement (PPIE) team, the delivery team within the NIHR CRF at Sheffield Teaching Hospitals NHS Foundation Trust provided Covid-19 vaccination study participants the opportunity to complete the survey whilst attending clinic to enhance submission rates.

The responses outlined the excellent experience and quality care that the participants received, with 90% agreeing or strongly agreeing that researchers valued their participation (9% stated neutral) and 98% stating that they had always been treated with courtesy and respect. 

These results are incredible, especially considering the speed in which the studies were set-up to respond to this urgent public health crisis. The survey also identified some important areas for improvement

The Operations Manager for the NIHR Sheffield Clinical Research Facility, Katy Shortland, emphasised the importance of PRES, stating “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)”.

Here are changes the research team made in response to the participant’s feedback:

  • Bottled water was given to participants after the survey results showed that those taking part would have liked refreshments.
  • For subsequent vaccine trials the number of participants attending per hour was reduced to improve the participant flow and experience.
  • The final round of the first large vaccination study and future vaccination studies were based solely at the Northern General Site, where there is more pay and display parking. This reduced confusion over parking and which site the participants needed to attend.
  • PRES was offered both digitally and via paper with 60% of initial respondents submitting a paper response indicating that both options should be offered.

Participants were informed of changes resulting from feedback via the participant experience feedback boards displayed in each CRF.

These changes were successful as the PRES respondents, in the second survey, made fewer comments about delays within clinic waiting times and all participants were clear on which site they needed to attend. Staff also found these new adjustments helpful, particularly the amended patient flow, which resulted in the busy vaccination clinics being much steadier in pace.

The survey method was fed back to the LCRN and also to the PPIE theme of the UKCRF Network to assist other CRFs on how to decide how to collect their surveys. Feedback was also given to the LCRN on our experiences of PRES which may inform administration in future years.

Thanks need to be given to all the staff, volunteers and participants that made the Covid-19 vaccine studies happen. If you would like to get involved in future Covid-19 vaccine studies, join the vaccine registry here.