Get involved in research

• Why support mental health research?
• Mental health research in the NHS
• Who carries out mental health research?
• How you can get involved

Why support mental health research?

Research is important because it can show which medication or talking therapy, or which  combination of treatments, works best for a particular mental health problem. Sometimes research shows that treatments are not as helpful as mental health professionals think they are.

Research projects can also evaluate the success of training and the day-to-day activities of mental health and social care professionals to find out whether they are working in the best possible way and offering the best sort of service.

Studies and trials can provide the evidence to prove a brand new treatment is useful, or demonstrate whether a new drug is safe and effective. The National Institute for Health and Care Excellence (NICE) is the organisation responsible for recommending treatments that should be available through the NHS in England. NICE uses the results of research studies to inform those recommendations, and the Department of Health expects NHS organisations to provide treatments and services that are based on up-to-date evidence provided by research results. You and your relative may wish to ask mental health professionals about the evidence that is informing the treatment they are proposing.

Other research projects seek to discover whether there are changes in the brain as a result of mental illness, or find out more about events and circumstances that may contribute to a mental health problem. The more researchers understand about the causes of a mental health problem, the more likely they are to be able to develop an effective treatment.

Research can be a lengthy process, however, and the universal gain can also be slow.

It may take researchers years to gain even a small amount of understanding about the causes of a particular mental health problem. Each study or trial adds a tiny piece to the overall picture: research allows a gradual accumulation of knowledge.

Any new medication must, by law, be tested in many studies before it finally comes on the market.

In any research study, it might take a few years for researchers to collect all the data they need, and it may be another year before that data is analysed. There is often a delay before research results are published and researchers mostly won't talk in detail about their results until they appear in an academic journal.

Sometimes research that has shown a brand new therapy is effective, or that a particular area of the brain seems to play a part in the development of a mental health problem, may need to be repeated to check the results are not by chance.

However, individuals who take part in research projects may benefit immediately – if a new drug or treatment proves to be effective, for example.

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Mental health research in the NHS

Most mental health research is carried out 'within the NHS'. This means participants are recruited through mental health services run by NHS organisations. (Participants may also be recruited through services run by voluntary or private sector organisations.)

Scientific research uses very particular methods, follows specific procedures and is governed by strict rules and regulations. Before any research project can start, researchers must gain a number of different approvals: this includes 'ethical approval' – they must demonstrate how they plan to protect the safety and wellbeing of people who agree to take part.

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Who carries out mental health research?

The person who is in overall charge and has overall responsibility for a project (mostly called a chief or principal investigator) and the researchers who work with him or her are mostly based within universities or other higher education institutions. Chief/principal investigators are often academic clinicians – this means they are academics working within a university who also work as a mental health professional in services run by a nearby NHS trust. Some are first and foremost mental health professionals who have a link with an academic organisation. Some researchers have personal experience of mental health problems and you may see them referred to as 'service user researchers'.

Often research is collaborative: experienced investigators, sometimes from different parts of the country, who share the same interest or have the same field of expertise, will work together on planning and running a study.

Mental health professionals working within services where participants are being recruited are also involved in research and will often help identify potential participants or explain the project to people they are supporting.

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How you can get involved

People who have experienced the symptoms of psychosis and their family members can get involved in research projects, both as participants and as advisors or consultants.

Many researchers recruit through mental health services: you can ask the mental health professional who supports your relative if they know about any research projects that are recruiting participants locally.

The NHS Choices website lists clinical trials that are investigating a particular condition and looking for participants: you can access information about trials investigating schizophrenia or bipolar disorder, for example, via the 'Health A-Z' page. Each entry in the ‘Health A-Z’ lists clinical trials that are investigating that particular condition. There is also a facility on the website to 'search for clinical trials'.

The Institute of Psychiatry at King's College London jointly coordinates (with the University of Manchester) the Mental Health Research Network (MHRN) in England. The MHRN helps researchers based at universities throughout the country to recruit people willing to take part in trials and studies through NHS services. It also works to involve people with experience of mental health problems and their family members in research as advisors, and as collaborators.

The MHRN runs FACTOR (which stands for Families/Friends and Carers Together in Research), a network of relatives and friends who are interested in mental health research. If you become part of FACTOR, you will be offered opportunities to comment on research proposals or get involved with research projects. You don’t need to know a lot about research to get involved. Visit the Mental Health Research Network’s website to find out more about FACTOR, and the work of the MHRN. You can also join FACTOR online.