Being part of a research project may mean you get better treatment at the same time as helping other people with your condition. So, what’s involved and how can you sign up? Our quick guide has some answers.
Who does research into lung disease?
Many hospitals, universities, drug companies and lung charities are involved in research into lung disease. Doctors, scientists, research nurses and patients all help to do this, as well as other health care professionals. The research aims to:
- improve our understanding of lung disease;
- come up with new preventions, treatments and cures for lung disease; and
- improve people’s quality of life.
The BLF funds research through our grants programme. Many other organisations fund research including the government, which distributes funds via the Medical Research Council and the National Institute for Health Research, for example.
Why should I take part in research?
Health care breakthroughs can only happen if evidence shows that a new prevention, treatment or cure is safe and beneficial. This evidence is gathered by carrying out research studies that involve patients.
There are lots of reasons to be involved in research. Some of these might benefit you personally:
- you might receive a better treatment;
- your condition might be monitored more closely;
- you and your doctor might learn more about your condition and be able to tailor your treatment more appropriately; and
- you might meet other people with the same condition.
There are also broader reasons to get involved:
- you might be helping to develop better ways to look after other people who have the same condition as you;
- you might be helping to improve the health of society more widely;
- you might be helping to provide a better future for people with lung disease.
What sort of research can I take part in?
There are three main types of research that you might take part in.
An observational study helps researchers understand your condition better but will not directly affect your health, as no new treatments are given. It might include:
- samples being taken, such as blood, phlegm and lung fluids;
- measurements being taken, such as a spirometry test; and
- an interview or questionnaire.
An interventional study is when a new treatment, for example physiotherapy or new drug, is given. Usually these studies are:
- ‘Placebo controlled.’ This means that a dummy treatment is given to some people, so that the new treatment can be compared against it.
- ‘Double blind.’ This means that neither the researchers nor the patient know whether the patient has been given the real treatment or the placebo until the end of the study.
- ‘Randomised.’ This means that neither the patient nor the researchers get to choose whether the patient gets the real treatment or the placebo.
Every drug that is currently prescribed for lung disease has been through research studies to make sure that it works and is safe to use.
Qualitative research aims to understand more about people’s experience of living with a condition. In this type of research you might be asked about your experiences of breathlessness, anxiety, pain, or of doing day-to-day activities, for example. The research team will try to identify patterns that will help them to understand the issues faced by people living with a lung disease, and ways to improve these issues.
How do I know that the study is a good one?
Most studies are reviewed by an independent scientific panel to make sure that they are well-designed and meet quality standards. Research carried out in the NHS must follow guidelines set out by the Research Governance Framework for Health and Social Care.
Once this scientific review has taken place, the research team then has to find money to fund the study. During this process, another independent review is carried out by the organisation considering awarding the money. Only the highest quality studies will be funded.
Do I have to get involved in research?
No one has to take part in research and your doctors and research team will understand if you do not want to. The care you receive will not otherwise be affected by your decision to take part or not take part in research.
If you are interested but you have some questions or concerns about what’s involved, how it might affect your condition, how much time it will take and how you’ll get to the research venue, speak to your health care or research team. They will be able to help answer your questions.
You can also call the BLF Helpline.
Will I get paid for participating in research, or will my benefits be affected?
Participating in medical research will usually involve travelling to the place where the research is being carried out, such as a hospital or clinic. Volunteers who take part in a medical research study will often have their travel expenses paid. Some research organisations will also offer an additional payment to compensate for a participant’s time and inconvenience. Before committing to taking part, it’s worthwhile asking the research team exactly what expenses will be covered and what financial compensation will be offered.
Payments are normally tax exempt but if you’re receiving benefits you should check with your benefits provider to see whether payments from participating in clinical trials will affect them.
How can I find out more about taking part in research?
Your health care team might ask you about taking part in a research study or you might want to look for a study yourself. There are lots of ways to find out more. Try talking to your GP or health care team and keeping an eye out in waiting rooms for adverts looking for research volunteers.
You can also try these useful links:
- The organisations Involve and People in Research support public involvement in medical research.
- NHS Choices ‘Getting involved in health research’
- The NIHR’s patient and public webpage
- The NIHR’s UK Clinical Research Network Study Portfolio for lung disease
- The NIHR’s UK Clinical Research Network Study Portfolio for lung cancer