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How you can get involved in research
There are many ways you can be involved in research if you’re living with a lung condition. Research is a great tool for improving the diagnosis and treatment of lung disease. If you take part in research now, this may help to prevent lung disease in the future.
You can ask your specialist care team about research opportunities, or you may be asked to take part in research by your specialist nurse or a doctor.
Before you decide if you want to be part of research, make sure you ask your health care professional to explain what is involved. You will need to give your written consent to take part. You can choose to withdraw from research projects you have agreed to take part in at any time.
If you decide not to take part in research, you will receive the standard, recommended care for your lung condition.
Our trial nurse assured us that we could sign up for the trial but then withdraw at any point if we changed our minds, even right up until he went down to the operating theatre. So we signed up for the trial, knowing that our options were still open.Sita, who's husband Calvin has mesothelioma
So called ‘interventional’ clinical trials help find new ways to manage a condition. They may compare a new treatment like a drug with the standard treatment. Or a new treatment may be compared with a placebo - a substance with no effects.
Each clinical trial will have specific criteria about who can join, called eligibility.
You can find out about trials you could take part in by visiting:
- National Institute for Health Research (NIHR) – UK clinical trial gateway
- World Health Organisation (lists trials internationally)
- Clinical trials.gov (lists trials internationally)
- Cancer Research UK (for cancer trials)
More information about clinical trials can be found on the NHS Choices website.
Other ways to take part in research
If you don’t fit the criteria for a current clinical trial, there are other ways to take part in research to help others in the future:
Observational trials or cohort studies
This research follows a group of people with a similar condition, called a cohort, over time. If you join this type of study, information about your lifestyle and any changes in your health will be recorded. This can help understand how conditions develop.
This involves giving small amounts of blood, urine or tissue. This is stored with anonymised data about you. Scientists use these samples for research.
Being part of a registry
A registry is a large collection of data about people with a medical condition. If you take part, any changes in your condition and treatments are recorded. The information helps to understand a condition better or to plan health care services.
Sharing your experiences
Some research focuses on how it feels to live day-to-day with lung disease. The research aims to assess your quality of life and how your lung condition affects this, often as part of a larger study.
Other ways to support research without directly taking part in it
Helping design research
Researchers want feedback from people with a lung condition to design their research projects. This helps to make sure that the study will work well and will answer the research question in a meaningful way. This is particularly useful for clinical trials as people with a lung condition directly participate and need to be recruited to take part.
Helping to oversee research
Research studies like clinical trials are often monitored by a ‘trial steering committee’. This is a group of people who make sure a trial is running well, is making progress and can help troubleshoot any issues. Committees like this involve the research team who are carrying out the work and often include people who have the lung condition that is being studied. Involving people with a condition in these committees is crucial in making sure research is carried out properly and it’s a great way for people to learn more about how research works while making a valuable contribution to it.
Your health data and research
The new General Data Protection Regulations (GDPR) will come into force on 25 May 2018. This is a new set of rules designed to give people more control over their data. On the same day, NHS England and NHS Digital will introduce a national opt-out programme enabling people to opt-out of having their personal confidential medical information used for research and NHS service planning.
Patient data (when used and protected appropriately) is an extremely valuable resource that underpins research to improve prevention, diagnosis and treatment of disease. It can improve care and save lives. If you’d like to find out more about how patient data can make a positive difference, read this Association of Medical Research Charities report (PDF, 3MB).
To help make up your mind about whether you’d like to opt-out of sharing your health data for NHS planning and research purposes, take a look at the Understanding Patient Data website.