Survey: nine in ten NHS research participants had good experience
Nine in ten Thames Valley NHS research participants had a good experience of taking part in their study, according to a recent survey.
Of the 1,021 who completed the survey, 91.1 percent had a good experience and 84.3 percent would volunteer again.
When asked why they took part, 39.5 percent said they volunteered for studies, such as researching new tests and treatments, to help others.
Other reasons included an interest in research (21.6 percent), to improve their condition (19 percent) and to understand their condition better (15.8 percent).
Carers of participants who lack the capacity to consent and children aged 5 to 12 and their parents were also surveyed.
A comprehensive report is today published on the results of the anonymous Participant Research Experience Survey (PRES), conducted by the NIHR Clinical Research Network Thames Valley and South Midlands between June 2019 and March 2020.
Comments from participants, surveyed in a range of healthcare settings, including hospitals and GP practices, included:
“I believe we should all do our bit for research, not just leave to [a] ‘someone will do it’ attitude.”
“Being involved has allowed me to feel like I have more control in my condition, which is good for my physical and mental health.”
“All medical staff I came in contact with were so very kind, re-assured me all along the trial, explaining every minute detail. I cannot speak highly enough of every single one of them”
It recorded 699 comments about what respondents liked about taking part and 136 comments about what they didn’t like.
This has helped inform recommendations for healthcare staff, particularly around information provided to participants on issues such as what the study will involve, when study results will be available and parking.
Studies on which patients were surveyed include:
- A trial into whether daily aspirin can prevent cardiovascular disease in people with chronic kidney disease.
- A study collecting data and blood samples from people with mental health conditions to improve diagnosis and treatments.
- A study into whether two newly discovered types of skin immune cells contribute to inflammation in patients with eczema and psoriasis.
Depending on the type of the research, studies are completed in hospitals, GP practices, at home or community settings such as schools. These can involve drug trials, questionnaires and giving consent to have medical notes and blood samples studied for research.
Prof Belinda Lennox, Clinical Director for the NIHR Clinical Research Network Thames Valley and South Midlands, said: “Clinical research has never been more critical. All of us in Thames Valley and South Midlands have been focused on delivering the urgent COVID-19 research studies that are currently running in the NHS.
“It has been a monumental effort, recruiting participants to clinical trials in hospitals and community settings and vaccine studies in healthy volunteers.
“This has only been possible because of the altruism and good will of the participants who volunteered their time to answer these vital research questions, even though they may not benefit themselves.
“I am therefore delighted that more than 90 percent of participants involved in research in our region over the last year had a good experience and more than 80 percent would take part again.
“Whilst this is positive, we are keen to improve further and we will use the feedback from the survey to learn how to increase the proportion of people that have a good experience.”
Learn more about research at on the Be Part of Research website.