Welcome. Healthtalkonline, an award-winning charity website, lets you share in other people's experiences of health and illness. This information is based on qualitative research into patient experiences led by experts at the University of Oxford.
Taking part in biobanking involves donating samples of blood, tissue, fat and other body fluids which are used in research to improve our understanding of health and disease. Samples may be stored for long periods of time, depending on the study, so that long term future research can be carried out. This new Healthtalkonline section on Experiences of Biobanking Projects includes interviews with 21 people from different backgrounds discussing what it is like to be involved in biobanking, the reasons they took part, the information they needed and the concerns they had. There are accounts from healthy volunteers, pregnant women, people with health conditions, and those who chose not to take part.
Well-designed clinical trials are a vital contribution to advancing medical knowledge, in order to improve treatment, care and quality of life for patients. It is important that trial volunteers understand what is involved and are able to make an informed choice. The new Healthtalkonline section on Experiences of Clinical Trials features interviews with 42 people from a wide range of backgrounds talking about why they took part in a trial, what information they needed, and what it was like for them. It also includes accounts from patients who decided not to take part, and those who withdrew from a trial.
Clinical trials: Parents’ experiences
Well-designed clinical trials make a vital contribution to advancing medical knowledge, and so improve treatment, care and quality of life for all, including children. Because children are different from adults developmentally and physiologically, clinical trials in children are essential to ensure they receive appropriate, safe and effective treatments and care.
When parents are asked to enrol their children in a clinical trial it is important they understand what is involved and can make informed choices – together with their children, if they are old enough. In this healthtalkonline module 24 parents and 3 health professionals share their experiences of children being invited to take part in clinical trials.
Heart valve disease or valvular heart disease is the name given to problems with one or more of the heart’s four valves. In a heart which is working normally, valves keep blood flowing in the right direction and entering or leaving the heart’s chambers only at the right time. Heart valve disease can develop before birth, in which case it is called ‘congenital’. It can also be caused by the effects of certain infections, such as rheumatic fever, or by age-related “wear and tear”.
Symptoms of heart valve disease vary from person to person, and are usually not obvious until the disease is quite advanced and needs medical or surgical treatment. This means we do not know how many people are living with heart valve disease without realising they have it, or what happens to them in the longer term.
We interviewed 18 people who were taking part in a new research study which is screening people aged over 65 to find out how common heart valve disease is. 7 of these people were interviewed a second time after they had been for a follow up appointment. At present, screening for heart valve disease is not available to everyone throughout the UK.
Coming soon – lay involvement in medical research
The Oxford Biomedical Research Centre (BRC), based at the Oxford University Hospitals Trust, is continuing to work closely with Healthtalkonline and the Health Experiences Research Group to explore people's experiences of research participation and improve public awareness, engagement and involvement. The BRC funds a fellowship (held by Louise Locock) to conduct interviews with patients around different aspects of research participation. These interviews are used to create new resources on Healthtalkonline, to raise awareness and to provide information for patients asked to take part in such research. They also help inform staff involved in conducting research, giving them insight into what patients feel about research participation and stimulating discussion about how care and information can be improved.
The next study will be on the experiences of lay people who have become involved in the design and management of medical research, either because they or a family member are a patient, or because they have a general interest in medical research and want to volunteer. This will include people who have been on ethics committees, national funding panels or trial steering groups, or who have become involved in setting research priorities (perhaps through medical charities), designing research studies and helping to carry out research. The interviews will explore why people got involved, what their experiences have been, what has helped or hindered their involvement and how they think people can be more actively involved.
If you have been involved in any of these ways and would like to find out more about being interviewed, please contact firstname.lastname@example.org