Participating in research projects
New treatments will only become available on the NHS if there is evidence to prove they are effective. The only way to collect that evidence is by carrying out research. If you agree to take part in a research study testing a new treatment – which might be a talking therapy, a drug, or a support package – you will be helping to prove whether it works or not.
If you agree to take part in a study that aims to find out more about the particular mental health problem you have, you will help research teams learn about how it develops, or understand more about different symptoms. This knowledge and understanding will allow them to develop new treatments in future – treatments that might benefit you, or other people with the same mental health problem.
Different types of research
Research studies testing new treatments are called ‘clinical trials’. Many of the clinical trials that we support compare two or more types of treatment.
Often a new treatment will be compared to an existing treatment to see which one is most effective. So if you sign up for a trial that is testing a new talking therapy, for example, you may find you are not given the new therapy. Instead, you might be in a ‘treatment as usual’ group – this means there will be no change to your existing treatment. Everybody who agrees to participate, however, will be asked to give information about themselves and their symptoms throughout the period of the trial. The information given by people in the ‘treatment as usual’ group will then be compared with the information given by people who are trying out the new treatment. This allows researchers to find out what sort of difference the new treatment makes.
Many trials that compare treatments are ‘randomised’ – people who agree to take part are randomly put into one of the comparison groups. This means you won’t have a say in whether you test the new treatment or not. Doctors and other health professionals also have no influence over who gets put into which group.
Very occasionally, there are ‘patient preference’ trials. In this sort of study, people who agree to take part can choose what treatment or support package they try out.
There are other sorts of studies – researchers may ask you to keep a diary of how you are feeling, for example, or to note down when you experience particular symptoms.
Some projects recruit a large group of people who give information about themselves at regular intervals over a long period of time. By following people in this way, researchers can understand more about how different mental health problems develop.
Very occasionally, some studies that we support ask people to have scans so researchers can look at what’s happening inside their brains.
A tiny minority of studies we support ask people if they would mind giving a sample of blood so researchers can analyse DNA, or if they would mind giving a sample of saliva to allow scientists to measure chemicals like the stress hormone cortisol.
If you agree to take part in any research project, you will be asked questions about yourself and your mental health at the beginning of the study, and at other times as the study progresses. A researcher may interview you, or you may be asked to fill in questionnaires. Often researchers want to gather quite a lot of information, so this can be a time-consuming process.
Make sure you understand
what you will be asked to do
Before you decide to take part in a research project, it’s important that you understand exactly what you will be asked to do if you agree to participate, and how much time you will need to commit.
A researcher, or a clinical studies officer employed by the MHRN, will explain the purpose of the study to you, and tell you what the research is trying to find out.
They will tell you what the possible benefits are, and whether there are any risks. You will be given an information leaflet that explains the research project in more detail. It should also tell you who is leading the research and which organisation is funding the project.
You don’t have to agree to take part in a research project unless you want to. If you do agree to take part, all the information you give will be kept confidential.
Finding out about the results of research
If you volunteer to take part in a research study, you should be told about the results – but they may not be available for several years.
Research studies take a long time, particularly if they aim to recruit a large number of people. Even when the ‘testing’ part has finished, it normally takes a year or more for all the information to be analysed, and then the results are not normally publicised until they are published in a specialist academic journal.
If you agree to participate in a study, we suggest you ask a member of the research team how they are going to ensure you find out about the results.
page put on site 6 December 2010