Taking part in research

We need research for a number of different reasons:

Developing treatments

We need to find the best treatment for different types of arthritis and to make sure they’re safe.

Developing new tests

By monitoring the development of rheumatic conditions we can improve the ways of measuring how they affect people and the results of any treatment. This might be done in a number of ways, from creating new blood tests to asking patients to complete questionnaires about their condition and medication.

Providing care

We have to be sure that the ways of providing care are the best for everyone involved. For example, we can find out how often patients need to be seen by a doctor, which tells us if their treatment is working, or what therapies can help people ease their symptoms.

Finding out causes

We need to find out what causes the different types of rheumatic conditions so we can try to develop ways to control, cure or even prevent them in the future.

It’s mostly because of research that we’ve been able to improve the care of people with arthritis. We need to continue with research if we want to learn more about different conditions.

Research can be carried out by many different people, but generally researchers are the doctors and healthcare professionals who treat you.

Volunteers can get involved at different stages of research and can do a variety of things to help. You might even be able to conduct your own research if you’re involved in an organisation that has links to the medical community; for example a support group might be asked to conduct research that involves sending out a questionnaire to their members.

Where is research done?

A lot of research will be carried out in local health centres, but some studies will be based in hospitals, universities, research centres and other places. Some people participate in research from their own homes through telephone interviews or written questionnaires.

Before any research can be carried out, the researchers need to find out where there’s a gap in their current knowledge and develop a new idea. They create a research question (hypothesis) and then put together a research plan (protocol) to try to answer it. There are many different ways of carrying out research, but if you’re involved in any study it’ll probably be one of these types:

An observational study of an illness

In an observational study, researchers assess participants (people who are the subject of a study) and their condition over a period of time, which helps to explore the natural course of an illness.

This method might be used to test out theories, for example whether tiredness is related to the amount of exercise a person does. This type of study could be done using tests comparing levels of tiredness with hours of exercise to see if they’re linked.

A trial to compare two treatments

A trial is used to test whether a new treatment works. It’s done by comparing a group of people who are taking a new treatment with another group who are taking the standard treatment (the control group). In a randomised controlled trial (RCT), participants are put in a group at random.

Because personal beliefs about which drug a participant is taking might affect the results, the tablets or injections for both groups will look the same, and neither the participant nor the researcher will know which group individuals are in until after the trial is over. This process is called blinding.

Qualitative research into patient experiences

Qualitative research finds out how people cope with a certain condition. For example, a participant might be interviewed about their experiences of tiredness or pain. Their comments will be recorded, and every word and phrase from all the interviews in the study will be looked at to see what the common ideas are. Participants might be asked to do the interview on their own or in a small group.

Many people think that being involved in research means taking part in a study as a participant. Obviously this is a very important role, but there are many other things that you can do depending on what you’re interested in and what skills you have. You don’t need particular qualifications for many of the roles mentioned here but training may be available if it’s needed for your role. You may be offered interview skills training, for example.

These are just some examples of things you can do at the different stages of research:

Work with researchers to apply for funding

Most research projects need funding. Researchers have to apply for money to different organisations, such as NHS (National Health Service) Trusts, charities or research councils, by completing a research proposal or grant. This application tells the organisation what the study is about and what it’ll involve.

Funding organisations often prefer projects that include members of the public. Researchers might want you to help them apply for funding to show that they’re involving people who aren’t medical experts. This could involve working on the research proposal or presenting the proposal to the funding organisations. The advantage of this type of involvement is that you get to support a project right from the start and you might want to continue to be involved.

Joining boards, committees and groups

Joining a commissioning board

Funding organisations often have a commissioning board who advise them on what area of research they should give money to. Commissioning boards generally have lay members (members of the public who aren’t experts in the subject the board focuses on). If you joined as a lay member you might have a say in the topics and individual projects the organisation funds.

Joining an ethics committee

Once funding has been approved for the project, it’ll be assessed by an ethics committee. The ethics committee makes sure that the research is safe and checks that the possible benefits of the research outweigh the possible risks.

Like funding organisations, ethics committees also have a number of lay members. Ethics committee members usually have this role for a set period.

Joining an advisory or steering group

Advisory or steering groups help to develop the research project and look after it while it’s running by providing support and advice. They also need lay members. Joining gives you some influence over what the project is and how it’s done.

Becoming a participant

Every research project needs participants to be the subjects of the study. If you’re a participant, you might be asked to:

• attend a focus group (a group who meet to give feedback on a particular subject)
• have a blood test
• take a treatment – this could be a new medication or a current or ‘dummy’ drug with no active ingredient (placebo) to test the new treatment against
• have an x-ray
• attend a special research clinic
• talk to a researcher.

Before you become involved in the project, the researcher will clearly explain what you’ll need to do. If you’re going to be involved in a treatment trial, you may need to have certain tests before you can take part in the research. This might be to make sure you’re in good health or to find out certain things about your physical condition so the researchers can see if they’re affected during the study.

You may need tests during the trial to look at the effects of the treatment. You may be asked to avoid doing things that could affect the results, for example researchers might ask you to stop drinking alcohol before or during the study.

Carrying out research

Depending on the project, you could be one of the people conducting the research. This might involve:

• designing a questionnaire
• interviewing participants, for example over the phone or in person
• writing information leaflets
• reviewing information on the same topic.

Analysing the results of a research project

Once results have been collected, researchers need to analyse the data so they can see what the results mean and what effect they might have. If you have certain qualifications, you could examine the data, do statistical work, examine patterns or write up the results and conclusions. It’s quite unusual to get involved at this stage, and you’ll need to meet certain criteria beforehand, for example you’ll probably need to be qualified to a certain level in maths.

Telling people about the research

A wide range of people need to know about the results, for example doctors, the government, the media and the general public. You might help to get the information out to different groups, which could involve:

• giving a presentation to a local charity
• helping to write a report so everyone can understand what the findings mean
• writing an article for a journal or newspaper from a lay person’s point of view.

New research can’t be done unless the right people volunteer. Your doctor, a researcher or your local Social Services may contact you directly to ask you to help them, but you don’t have to wait to be approached.

There are a number of different ways you can get involved in research:

• Contact your doctor or rheumatology team – they may need people for their own research or can advise you on where to look for volunteering opportunities.
• Speak to your local hospital’s ethics committee to find out whether they’re recruiting for members.
• Become a member of a support group or organisation. Some larger patient support groups train their members to do their own research, and many charities need people to sit on their research committees. A researcher may also approach support groups to find people who want to get involved with their project.
• Reply to local or national adverts recruiting people.
• Contact organisations that commission research. If they don’t have anything available, you can leave your details so they can contact you in the future.
• Visit People in Research which support public involvement in medical research.

Before you join a research project, there are a number of things you should find out. The researcher should answer any questions you have, and you can talk to your friends, family and doctor if you have any concerns. Occasionally you’ll be asked to keep information about the study privatel because it might have an effect on the results. The researcher will tell you if that’s the case.

If you’re involved as a participant, the researcher will give you an information sheet that contains all the details of the study. Whatever role you’re taking on, it might be useful to find out the answer to the relevant questions below:

• What’s the purpose of the study?
• Why am I suitable?
• What will I be asked to do?
• Are there any benefits or risks in taking part?
• What if something goes wrong – am I insured?
• What happens at the end of the study?
• Will anyone be told I’m taking part?
• Who’s organising the study?

Before you take part in the research, you’ll be asked to sign a form to say that you’ve understood what the research involves and that you’re happy to take part. This is called giving your informed consent.

It’s important to find out how long the study will last so you can see how much commitment you'll need to give. Some studies take place over one session, while others can stretch over a number of years and might involve many visits to the test centre or your doctor. You should also find out if you’ll have to travel and if your expenses will be covered.

Most research projects are scientifically reviewed by an independent panel. All research done in the NHS must also follow the guidelines set out by the Research Governance Framework for Health and Social Care (PDF, 218 KB), which make sure that the project is safe, ethical and of a high quality.

Once the scientific review has taken place, the researchers have to apply for funding. Another independent review is carried out by the organisation awarding the money. All of these have high criteria that must be met before the organisation will agree to fund projects, and there’s a lot of competition – only the best-designed studies are funded.

Whatever research you take part in, you should feel happy and confident about your role. If you do have any problems, you should have someone who’ll be able to help you, for example if you’re ill and can’t attend an activity. Some studies have mentors, a person who has experience in your role and who can give you advice and support.

If you’re a participant, you can find out if the study has been approved by an ethics committee. It’s their job to look after your rights and well-being. The ethics committee will look at the information you’ll be given and check that it contains all the information you’ll need to make a decision about taking part in the research. It’ll make sure that the information is presented in a fair and balanced way. NHS research projects can't start without this approval.

If you decide you don’t want to be involved in a particular study, you don’t have to take part. Whether you were approached or you volunteered yourself, you can choose to leave the project at any point. No one will be offended, and you don’t have to give a reason. It won’t affect your normal care and it doesn’t mean that you can’t take part in research in future. You might find that you would prefer to be involved in other areas in research.

For many people, the main reason for being involved in research is to find out more information about their condition. Whether the research is successful or not you’ll have contributed to knowledge on the subject, and this could lead to the development of better treatment. There are other advantages to taking part in research.

If you’re a participant:

• you might be given a more effective treatment
• your condition may be monitored more closely
• more information will be known about you and the way your condition affects you, so it might be easier for your doctor to tailor your treatment in future
• you may meet other people with the same condition.

If you’re involved in other areas:

• you could be helping people who develop the condition in the future by improving the care they’ll get
• you may receive training that can be useful in other areas of your life
• it gives you the chance to give something back to society
• you can direct research into areas that you feel are most important
• you might be able to give support to others with the same condition.

While research is intended to find out new knowledge and develop better treatments, there can be disadvantages to taking part:

• If you’re on a treatment trial, you might experience some unexpected side-effects.
• The treatment may not work any better than the current one or may not be as effective.
• You can’t be sure of what might happen.
• You might not enjoy the role you have.
• You may need to take more blood tests or have more hospital visits than normal.
• You might find that more commitment is needed than you expected.

Researchers are already likely to have an idea of what the outcome might be and will have done everything possible to ensure your safety. If you’re involved in a treatment trial and there are any signs that it may be unsafe, the trial will be stopped immediately.

If you do have a negative experience, don’t let it put you off in the future. There are many different things you can do, and sometimes telling a researcher about a negative experience can help to improve the way they conduct their studies and the experiences for the next people they work with.

If you’ve only been involved in part of a project, there can be a long wait until the findings become available. If the researchers don’t automatically offer you the results, you can ask for them.

If you’ve been part of a drug trial and the new drug was more successful than the existing one, it doesn’t necessarily mean that it’ll be available straight away. The new treatment may need to undergo further tests, and it must then be licensed, meaning that the Medicines and Healthcare Products Regulatory Agency (MHRA) or the European Medicines Evaluation Agency (EMEA) allows the manufacturer to market the drug in the UK. After that, it must be approved by a national body such as the National Institute for Health and Clinical Excellence (NICE). Your doctor will be able to give you more information about when the drug may be available.

Versus Arthritis support much of the research into arthritis and related conditions in the UK. As well as directly funding research projects, we fund researchers in hospitals and universities. We also promote education for health professionals and patients. You can find out more about the projects we fund on our research pages.

Versus Arthritis work with researchers who meet the highest standards. They’re expected to follow all guidelines issued by the NHS and they must report their findings in international journals so that the medical community can share the new knowledge.

Versus Arthritis are also currently funding a study to find out whether dried blood spots be used for blood tests in clinical trials. If this blood storage method works it could dramatically increase the number of patients recruited to studies as well as the number of doctors who would be able to participate in clinical trials.

There are hundreds of research studies for arthritis and musculoskeletal disease being carried out in the UK.

These studies are looking at all types of treatments including drugs, physiotherapy, psychological treatments and surgery.

Studies usually take place in several locations, and some may also recruit remote participants.

Please note that all studies have strict criteria about who can take part.

Search for a research study to take part in. You will find details of research studies funded by Versus Arthritis that are currently recruiting and information on how you can participate.

The following organisations can also help with information and advice on taking part in research:

James Lind Alliance
Phone: 023 8059 5489
www.jla.nihr.ac.uk/

National Institute for Health Research (NIHR)
Email: enquiries@nihr.ac.uk
www.nihr.ac.uk

NHS Choices
www.nhs.uk/

People in Research (part of INVOLVE)
www.peopleinresearch.org.uk

UK Clinical Research Network
www.ukcrc.org

UK Cochrane Centre
Phone: 01865 516 300
www.ukcc.cochrane.org