Survey finds positive experiences of taking part in health research in Thames Valley

About nine in ten Thames Valley health research participants questioned said they would take part in another study, a survey published today shows.

The survey of experiences of volunteering for studies in the NHS, public health and social care found positive responses as well as areas where things could have been better. The responses are used to identify what is going well and where improvements could be made.

A total 1,222 people completed a questionnaire for studies in Berkshire, Buckinghamshire, Milton Keynes and Oxfordshire in the 12 months from 1 April 2023. View the report in PDF format or view the report in Microsoft Word format. A slide show summary is also available and site and study-level results are online.

The findings to multiple choice questions were:

• 88% said research staff always treated them with courtesy and respect
• 87% said they would consider taking part in research again
• 86% said researchers valued their taking part in the research
• 84% said the information they received prepared them before taking part
• 78% said they knew how to contact someone from the research team if they had any questions or concerns
• 65% said they knew how they would receive the results of the research
• 64% said they had been kept updated about the research

The survey also found a third of comments about what was positive about their experience was about staff. A typical comment read: “All clinic staff were lovely, welcoming and informative. Very professional and courteous at all times.”

There was also praise for how organised and efficient trials were, including being flexible around appointments to fit around participants’ other commitments. Many also said they wanted to help others, with one respondent stating: “For me it is about giving something back in a small way for all the care my family and I have received over the years”.

Reflecting the answers to some of the multiple choice questions (above), responses to what would have made participants’ experiences better included improved communication and receiving personal and overall study results.

A report about the results of the survey makes recommendations for research staff including communication about the study and results and planning the study where possible with the involvement of the public.

The responses were for people on studies supported by the National Institute for Health and Care Research Clinical Research Network (NIHR CRN), a Department of Health and Social Care-funded organisation that funds and supports the delivery of health and care research trials. A total 63,563 people were recruited to NIHR CRN-supported studies in Thames Valley during the survey period.

Surveys were completed for studies including:

• Breast cancer: a study into whether less frequent mammograms are as good as yearly scans for women aged 50 years and over who have had breast cancer. Women were randomly assigned to have mammograms once a year or less frequently with almost 200 recruited at hospitals in Berkshire, Buckinghamshire, Milton Keynes and Oxfordshire
• Loneliness: a questionnaire for adults social life and interactions, local community, employment, age and level of education to help researchers better understand and address the factors that contribute to loneliness, such as unemployment
• Depression: the PAX-D study where volunteers with treatment resistant depression were randomly assigned to take pramipexole, already used for Parkinson’s disease, or a placebo, to compare the two. Participants also attended clinics, provided samples and answered questions and completed computer tasks. A total 90 participated at Oxford’s Warneford Hospital, managed by Oxford Health NHS Foundation Trust

Dr Nick Thomas, Clinical Director at the NIHR Clinical Research Network Thames Valley and South Midlands, which manages the region’s survey, said: “The NIHR always welcomes this survey as it is a direct opinion from the most important member of the NHS clinical research community, the study participant. It is excellent to see that so many patients had good research experiences and that they would want to take part again. We are learning from all the feedback we received to ensure participants have the best possible research journey.”

Participating in health research helps develop new treatments, improve the NHS, public health and social care and save lives.

The NHS, public health and social care supports research by giving patients opportunities to take part in trials. Healthy people can also take part so results can be compared to those with a medical condition.

To learn more about research and to search for trials seeking volunteers visit Be Part of Research.

Research staff supported by the local NIHR CRN can request a speaker to give a presentation about the findings by contacting comms.crnthamesvalley@nihr.ac.uk.