What will I do as a patient, carer or member of the public involved in research?

Activities and tasks – many of which are carried out with researchers – might include:

  • Helping to decide what research is carried out – sometimes called “research priority setting”
  • Attending focus groups to agree how to carry out a research project
  • Helping to design a clinical trial or other study so that people will want to take part and that e.g. the numbers of hospital visits don’t make this too demanding
  • Reading, commenting on, writing or re-writing information for patients about a research project
  • Being on a committee or panel that meets to monitor the progress of a project – this may be in person, by phone or email

Is there a difference between involvement, engagement and participation in research?

Yes, although they are linked and one can lead to the other:

  • Patient and public involvement is the development of partnerships between patients, carers or other members of public and researchers. Such partnerships are made in order to influence what research is done, how, and what happens to the results. The main purpose of this website is to encourage patient and public involvement in research.
  • Patient and public engagement is the sharing of information and knowledge about research by professionals, such as at open days, science festivals or through newspapers or other media.
  • Patient and public participation is the recruitment of patients or others to take part in clinical trials or other research studies, which may include activities such as undergoing physical tests or completing a questionnaire or participating in a focus group as part of a research study.

Do I have to be a patient to get involved?

No, although most if not all of us are or have been patients. Different studies need different sorts of input; as you will see from the opportunities on this site, some projects are looking for patients with a given condition, or their carers, while others are not necessarily seeking input from people who have been ill. It can be very valuable for researchers to have help on aspects such as the language that they use from people who are not in their professional world, but they may not need to have experience of a given condition.

If you are thinking about participating in a trial or other study but are not a patient, you may be welcomed: some trials and studies need “controls” – healthy individuals – to compare test results with people who have specific conditions.

Will I be paid for involvement and have my expenses reimbursed?

We would like to be able to pay everyone who gets involved as a partner in medical research, and we are working with others to help make this a reality. However, there are complex issues to take into account such as whether payment might cause problems for people who get state benefits or a pension. In part for this reason, different organisations whose work is promoted on this site currently have different policies about paying for involvement, so it is always worth asking about this at the beginning of any work you do with them. If you want to ask us a question about payment for involvement, then please do so, by contacting us.

You should never be out of pocket as a result of involvement and all expenses such as travel, phone, accommodation – and usually the costs of arranging care for children or other family dependents – should be covered. The researchers that you work with should make the arrangements clear. If they don’t, please ask them at the start of any involvement work that you do.

I am confused by the jargon and acronyms used in medical research – what do they mean?

We hope that this website is written clearly – but do please contact us if you have comments about how we could do things differently or better.

If you would like help to understand medical research jargon, this is a good place to look: invo.org.uk/resource-centre/useful-information/jargon-buster

or for acronyms: nihr.ac.uk/glossary

How can I join a clinical trial and what will be expected of me?

As explained elsewhere, the main aim of this site is to help make partnerships between researchers and patients, carers and members of the public when researchers are planning what research to do and how to do it. If you are interested in joining a trial, the UK Clinical Trials Gateway may be able to help you. However, while this site is designed to be accessible to patients, we are aware that some of the content is too complex and we are working with those running and recruiting to trials in our area to change this. If you cannot find what you are looking for on the site, or do not understand it, please contact us. This is important as it will help us to help you find out what you need to know about trials, but we will also use information from you to make the necessary improvements to our section of the Gateway and hope that others running trials elsewhere in the UK may do the same.

Tasks and activities for participants in clinical trials and studies may include

  • Periodic visits to a clinic, hospital, GP surgery or research unit for tests
  • Taking drugs or receiving other treatments
  • Filling in questionnaires

Register Interest Online →