Survey shows positive experiences of taking part in research

Nine in ten Thames Valley health research study participants surveyed said they would consider taking part in another trial, new figures show.

More than 1,100 people were surveyed about their experience of taking part in research supported by the National Institute for Health and Care Research Clinical Research Network (NIHR CRN) in Berkshire, Buckinghamshire, Milton Keynes and Oxfordshire.

This included studies in NHS hospitals, mental health settings and in the community, such as completing online questionnaires. A report of the findings is published today (Word version of the report). The results are included in analysis of national findings, which are also published today.

A total 90.2% said they would consider taking part in research again. Other findings from the anonymous survey included:

• 94.6% said research staff always treated them with courtesy and respect
• 91.6% said the information they received prepared them before taking part
• 90.8% said researchers valued their taking part in the research
• 85.6% said they knew how to contact someone from the research team if they had any questions or concerns
• 69.5% said they knew how they would receive the results of the research
• 67.8% said they had been kept updated about the research
• Staff attitudes, effective study administration and helping others were the most common topics participants felt positive about
• Effective study administration, study methodology and receiving results were the most common topics participants felt would have made their experience better

In the 12 months from 1 April 2022 - when the survey took place - the NIHR CRN supported 740 studies in Thames Valley. This included 9,295 participants in Berkshire, 9,279 in Buckinghamshire, 8,044 in Milton Keynes and 37,124 in Oxfordshire (see notes to editors).

Among the studies participants volunteered for in the 12 month period were:

• A drug to reduce the risk of heart attacks and strokes in people with vascular disease
• How best to investigate if a patient with a severe headache has had a brain haemorrhage (a bleed in or around the brain)
• Investigating the link between immune system problems and psychosis, a condition that can cause hallucinations or delusions
• A system which monitors trends in people who self-harm to provide better care.

Comments from those who completed the survey include:

• “My research experience has been excellent. Everyone has been so lovely and friendly”
• “It’s nice to be involved in research of drugs that may help others, just as I'm sure that others did for drugs which I benefit from”
• “The whole experience was excellent. Everyone on the research team was friendly, helpful and kept me informed every step of the way”
• “I felt I was doing something positive to help with future treatments. The staff made me feel valued and made everything as easy as possible”

Among those taking part in research is Jacob Clark, 16, who has been in a trial into the effects of a drug for children with haemophilia B at Oxford’s John Radcliffe Hospital for the last 10 years. The study assesses a blood clotting drug as a preventative treatment for life-threatening bleeds in children. 

Haemophilia B is a blood clotting disorder where injured blood vessels cannot heal normally. This can result in bleeds inside the body as well as from the skin. Bleeds can be fatal if they are not stopped or occur in vital organs such as the brain.

Jacob, of Aston Clinton, Buckinghamshire said: “I’m really grateful for all the care and treatment I’ve had from my haemophilia medical team. Being part of the trial has been a great experience. The treatment meant I could experience my childhood like any normal boy.”

Mother Eloise said: “The study had completely changed Jacob’s life and I don’t know what his life would be like if he wasn’t on it. He has broken his arm twice and didn’t need any additional treatment for bleeds. He hasn’t had any bleeds since he has been on the trial and can’t really remember what they are like.”

Prof Najib Rahman, Respiratory Speciality Lead at the NIHR Clinical Research Network Thames Valley and South Midlands, which managed the survey in the region, said: “It is fantastic to see that so many people would be happy to consider taking part in further studies. This reflects the importance of the studies that are supported by the NIHR and is testament to the work of our highly skilled and dedicated research teams. 

“Completing the research study circle of engagement, initiation, follow up, closure and reporting results back to participants are all key elements to a successful study and a fulfilling participant experience. We will be looking at the survey feedback to see how we can ensure this happens across studies we support.”

The survey is used to support researchers to make improvements to how studies are provided. For example, a vaccine study created an infographic to help prepare participants for the blood taking part of the trial following feedback given in the survey.

To take part in research visit the Be Part of Research website to search for and sign up to be contacted about studies.