Date: 20 May 2019
The latest NIHR survey of those taking part in research, completed by over 8,500 participants across England over the last year, found that 90 per cent of people had a good experience of participating in research.
Taking part in clinical research trials is not only beneficial to the person taking part but their contribution can also make a difference to others with the same condition.
Participating offers the opportunity for people to learn more about their condition, can offer enhanced treatment and access to the most cutting-edge treatment available.
Safety is often the greatest concern of members of the public when asked if they would take part in a clinical trial. In fact, clinical trials in the UK have an excellent safety record, with robust rules and safety procedures in place to protect participants.
Trials are not just about new drugs – observational studies are also set up to investigate other aspects of living with a health condition, such as whether the prescribed dose of existing medicines is correct, or to ensure that all the ways that the condition can affect a person’s life are taken into account.
Hannah Williams, Research Delivery Manager at the Clinical Research Network, says: “Evidence suggests that being given the opportunity to take part in research can benefit patients and the wider healthcare system, so if you have a health condition that requires you to visit your GP or local hospital, ask about the research opportunities available. Across the West of England, we are striving to make sure there is research for all health conditions to enhance the excellent clinical care that already exists."
Baroness Blackwood, Parliamentary Under Secretary of State at the Department of Health and Social Care said: “From the eradication of smallpox and the discovery of penicillin, the UK has a strong track record of public health successes which have saved countless lives. All of our successes to date would have been impossible without world-leading research and the selfless volunteers who take part in clinical trials. “Through our Long Term Plan, we are determined to make it even easier for people to get involved in research and the NIHR’s Be Part of Research website is an important step to making this happen.”
One example of an observational study in the ASSESS study, based in Bath Hospitals. This study is aiming to improve the assessment measures in psoriatic arthritis2 in ways that are important to patients living with the condition.
From the outset, patient participation has been essential for the design and development of the trial.
Lead Investigator, Dr William Tillett said: “The ASSESS study aims to improve the assessment of psoriatic arthritis. The burden of disease is often greater than clinicians realise because people with psoriatic arthritis don’t just have arthritis, they can have skin psoriasis, tendonitis and spinal problems.
We are developing a better way of assessing psoriatic arthritis that captures all of the ways in which patients are affected. Existing measurement tools did not have meaningful patient involvement during the development phases and we have shown they miss important aspects of disease activity, including pain and fatigue. By incorporating the patient perspective throughout the ASSESS study we are capturing the ‘lived experience’ of the disease. The new measurement tool can then be used to better assess new drugs and treatment strategies.”
Mrs Mel Brooke is a Patient Research Partner who has worked alongside the rheumatology consultants at RNHND and researchers from Bath University. As a patient with Psoriatic Arthritis who leads a peer support group, she has valuable insight into, experience and understanding of living with the condition.
She said: “As a Patient Research Partner, you are there to help ensure that information is clear, there is minimal use of technical jargon and that any information for patients is easy to understand from a non-clinical, non-expert perspective. You are also there to advocate for the patient voice – saying if you believe patients would or would not be happy with elements of the study, how participation may be made easier and/or as minimally invasive as possible for them should there be procedures and clinic visits.”
“I have always been welcomed and treated with respect – no question is unanswered or ignored. Having patient partners on hand can help to identify and answer study questions quickly and more accurately reflect patient needs. Researchers also learn much about the reality of life with disease, its impact on daily life and what really matters to the patient – leading to better designed, more targeted and (hopefully) effective treatments and support.”
Speaking about the future of Patient Research Partners, Dr Tillett said: “Academics and clinicians are increasingly realising the important of Patient Research Partners. The real challenge that we face is in reaching and supporting more people who can participate and contribute to the wide variety of exciting research being made at the moment and taking the experience we have in rheumatology to other disease areas.”
Adam, 38, has lived in Bristol for about 13 years. A sound engineer, he travels far and wide for work.
“My condition is called psoriatic arthritis which is a form of rheumatoid arthritis which I’ve had since my early teens. Symptoms include flaky skin on the knuckles and the knees. This never really stopped me doing what I wanted to do until about five or six years ago when I started to get aches and pains in my thumb joints. I didn’t do anything about it for a long time but then it started affecting my work as it became painful. My GP referred to a specialist in Bath.
“At the hospital I was approached by Dr Tillet, who gave me loads of information about the study and asked me to consider taking part. There was a Facebook group with other patients.
“They still don’t know why my condition happens. I felt that by taking part it could help someone else. When I was first diagnosed they seemed to have lots of creams but they didn’t seem to do very much for me. There now seems to be quite a lot of advances in medicines for it since ten or twelve years ago.
“I had not done any studies like this before so I didn’t know what to expect really. It was actually a regular questionnaire about my skin condition and my mood, that kind of thing. There was a lot of repetition but I understand why. It was quite interesting because of the questions that were asked. There were sections on how the condition can affect mental health which I never really knew before. It gave me more insight into the condition.
There were sections on how the condition can affect mental health which I never really knew before. It gave me more insight into the condition.
“I’d probably take part in research again if it was offered. It’s the idea of helping out and contributing to the cause of improving healthcare and treatment. I guess the more people that take part in research, the more researchers can fine tune and focus the research.”
For more news about CRN WE, sign up to receive our email newsletter here: http://eepurl.com/gdyPWr