Online help for people considering clinical trials
30 Jun 09
People’s experiences of taking part in clinical trials have been captured in a new section of www.healthtalkonline.org, the award-winning patient website based on Oxford University research.
The online resource will allow people who are considering participating in a clinical trials to share in the experiences of others who have been in the same position.
Clinical trials are research studies that test and compare new medical treatments in people. They are designed to answer questions such as does a new treatment work, does it work better than existing treatments, and does it have any side effects? Clinical trials rely on volunteers agreeing to take part, and it is important that they understand what is involved and can make an informed choice.
The website includes video and audio interviews with over 40 people talking about why they took part – or chose not to take part – in a clinical trial and what it was like for them.
The site is based on research carried out by the DIPEx Health Experiences Research Group at the University of Oxford and funded by the National Institute for Health Research (NIHR).
Louise Locock, who headed up the project, says: ‘Clinical trials are a vital part of improving healthcare through the development of new treatments. This research provides much-needed information on how people react to participation in trials, what their experiences of trials have been and how they view the management of such trials, including after-care.’
Louise LocockThis research provides much-needed information on how people react to participation in trials, what their experiences of trials have been and how they view the management of such trials.
The website includes summaries of what interviewees said on a variety of topics, including how they were approached about taking part in a trial, their reasons for taking part or saying no, the practicalities of appointments, tests and monitoring, and their feelings when a trial ends.
‘All you can say is you’re doing your best to help other people and mankind, and we won’t get anywhere if nobody volunteers for anything,’ says Sarah, a participant in a clinical trial who was interviewed for the website. ‘You know you’re in good hands …and it may give you some benefits.
‘I was contacted by my GP to ask if I’d like to go on a medical trial looking into blood pressure and various ways of treating it,’ says Phil, another volunteer. ‘So I took part in the trial and that lasted for about six years. And I was glad I did, because the treatment was monitored, I was thoroughly checked twice a year, six-monthly intervals, and the whole thing was much more relaxed than going to the GP … Everything was tailored towards blood pressure. So any little things that cropped up they were able to look into straight away.'
The website will also give health professionals and researchers insights into what really matters to people when they are invited to participate in a trial.
‘Please be very patient with us. We are stressed, we are very, very worried about our conditions, we are very scared,’ says Pam. ‘Please answer all our questions. Some of them may seem stupid to you, sometimes we may not take on board everything you say to us… You’ve got to give us confidence in the trial, and explain it all in words of one syllable.'
The www.healthtalkonline.org website now includes sections on almost 50 different illnesses and health conditions, including cancers, heart disease, Parkinson’s disease, autism, HIV, diabetes, rheumatoid arthritis, and mental health. It is aimed at patients, their carers, family and friends, doctors, nurses and other health professionals.