Health and care research aims to identify answers and find out what the best options are for our health. This helps those within healthcare to make informed decisions about improvements or changes. The goals of health and care research are to:
- diagnose diseases earlier or more accurately
- provide life-changing treatments
- prevent people from developing conditions
- improve health and care for generations to come
- ensure everyone has a better quality of life
Althogh health professionals already know a great deal, there are still so many questions that need answers. Sometimes, the outcome of research just confirms that what we have at the moment is the best available to us right now.
Research is only possible if patients and healthy volunteers are willing to take part. Some people may find the idea of taking part in research quite daunting – but it can be incredibly rewarding to be able to contribute to the health of others.
To make a decision about whether to take part in research, you need to have all the facts. Here we look at some of the common myths around health and care research, and the reality behind them.
Taking partin health and care research is dangerous, as it involves new and risky drugs or practices
All health and social care research has to go through very strict ethical and regulatory checks before it can go ahead. Any research carried out in the UK is highly regulated in order to protect participants and to ensure those involved are treated with respect at all times. Some research involves taking a new medicine or having a new form of treatment. Other studies might require something as simple as filling out a questionnaire or leaving a sample. All participants are very closely monitored while they are taking part in research, so although health and care research is not entirely risk-free, the chances of something going wrong are small.
If I take part in health and care research, I won’t get the treatment I need
Caring for you is the priority of any healthcare professional. Your health comes first, so if you decide to take part in research, you will still receive the same standard of care, but if the research involves the testing of a new treatment, you may be given this as well. People who take part in trials often say that they feel very well looked after, as they are usually monitored more closely than would be the case under standard care.
My doctor will know about any health and care research that I could take part in
Not all health and care professionals will necessarily know about all of the research opportunities available to you. However, it’s worth asking them about opportunities to get involved in research since they should know how to find out what might be available. The NIHR website is also a good place to find out about research you could take part in. Use the search bar at the very top of this page to type in your town, postcode, body part, medicine or health condition, to find trials relevant to you. You can also find a condition by pressing the “view conditions” button.
All health and care research takes place in hospitals
Health and care research can take place in many different locations, including schools, GP surgeries or care homes depending on the type of research. It is increasingly common for research to take place outside of hospitals. Advances in digital technology means there are now more ways to get involved in research from the comfort of your own home.
Health and care research is about testing new drugs
Not all health and care research involves taking drugs. Research can also involve testing a new device to help monitor or administer a medicine. Or it might look at whether certain changes in diet and lifestyle could help improve people’s health. Some research might simply involve talking to someone, completing a short questionnaire or even using an app on a mobile device. There are also many different ways to be involved in research without being a participant in a research study
People who take part in health and care research are being used as guinea pigs
Whatever the type of research, anyone who is involved in a study should be treated with respect. The research is not being done ‘to them’: it is being conducted ‘with them’. Those who choose to participate in research often say that they feel well cared for as they have a dedicated contact within the research staff team. Reassuringly, research teams must follow ethical guidance and before the research can take place, they must seek approval for their plan from a Research Ethics Committee. Research that involves new medicines is not tested on people first and it will have gone through a process to ensure it is ready for use with people.
If you agree to be in a trial, you can’t change your mind
It’s always your choice whether to take part in a study and you can always change your mind at any time. Before you make the decision whether to take part or not, the researchers will speak to you about it, to ensure you fully understand what’s involved. Studies can run for several years and it’s only natural that during that time, people’s circumstances may change to make it difficult to continue taking part. That’s why every trial must always allow for participants to change their minds.
Health and care research is about finding cures for diseases
Health and care research looks at how to prevent diseases and improve our quality of life and wellbeing, as well as how to cure diseases. It’s worth knowing that there are a range of factors which can contribute to your health, for example: where you live, what you eat and whether you have a good support network of family and friends. Public health research seeks to answer questions about some of these factors. Additionally, research can lead to improvements in end-of-life care across all diseases and to help patients to live in comfort and die with dignity.
No research is done for mental health, only physical diseases or conditions
It’s well known that people’s health is not limited to physical disease; it includes their mental well-being also. This is why the NIHR funds research looking at both our mental and physical health. For example, this might involve seeing whether medicine, counselling or a combination of both, provides the best treatment for individuals living with depression. Members of the public can have a role in identifying and prioritising where health research is focused. Given increased awareness of the effects our mental health can have on our physical well-being, this is likely to be a growing area of health and social care research. Read about all the research happening within the NIHR specialty for mental health.
Health and care research is only done with adults, not children
Children can take part in health and care research with the permission of their legal guardian. The research team may meet with the child to make sure they understand what the research is about. They may use pictures to explain the study. Children are not ‘small adults’ – so treatments that work on adults can’t always simply be scaled down to work in children. This means research in child health is vital to help find new and better ways to care for children. You can find studies for children by typing “Children” in the search box at the very top of this page.
You won’t be in control of any data that’s collected about you during a health study
When you sign up for a health study, the researchers will provide details of what will happen to the data they collect about you, to ensure you’re happy with that. Data collected during health and care studies is ‘anonymised’ so it is no longer linked to your name, only to details about you such as your age, gender, ethnicity etc. This data would, if the study allows, only then be shared between researchers without any risk to your privacy or confidentiality. The NIHR strongly supports the sharing of data in the most appropriate way as this ensures research can provide the maximum possible benefits to patients and the wider public. All research has to go through ethical approvals, which also cover the use of patient data, and must also comply with the relevant laws and regulations on privacy and confidentiality.
Health and care research only benefits the drug companies
Health research is funded by drug companies, charities and the government, although when the NHS undertakes research specifically for drug companies, the company pays the full cost. Everyone benefits from the development of new medicines, and without commercial drug companies there would be less research taking place.
Last year more than 1.3 million people, of all ages, took part in vital health and social care research. It is through high quality, ethically-approved research, that we can develop better treatments, improve diagnosis, learn more about prevention of illness and provide better care for everyone.