Information for the general public

Members of the public can be invited to participate in research as a result of their connection with the NHS. If you are asked to be a participant in a research study, whether as a patient, member of staff, or healthy volunteer you may have a number of questions about what this may mean. This section of the website aims to answer some of these questions for you, provide you with details of local current research, and how you can get involved in local research.
All research that takes place in the NHS has to be approved by at least by a NHS research ethics committee and the NHS organisation that is hosting the research. Researchers are bound by the Department of Health Research Governance Framework for all research that takes place in England. The Research Governance Framework lists the responsibilities of research participants as:

3.4.1 Effective and responsive services depend on good research. Through this framework and related provisions, the Government and its partners strive to ensure that research conducted in health and social care in England offers the likelihood of real benefits either to those who participate, or to those who use services subsequently, or both. Anyone using health and social care services should give serious consideration to becoming involved in developing or undertaking research studies.

3.4.2 Researchers are responsible for selecting means of communication that ensure potential participants are fully informed before deciding whether or not to join a study. In clinical trials involving medicines, there is a legal requirement to provide an interview with a member of the research team and a contact point offering further information about the trial. Potential participants should not hesitate to ask if they do not understand the information and explanations given.

Research Governance Framework for Health and Social Care, 2nd Edition 2005

You can make a real contribution to research by taking part.

The NHS Norfolk R&D office has produced a leaflet for the general public which explains why we do research, and what to expect if you are asked to take part in a research project. Please read this leaflet for further information.

Clinical Trials

If you are asked to be involved in a trial of a new drug, medical device or treatment, there are various websites which can help you find out what it is like to be involved.

HealthTalkOnline - Contains further information on Clinical Trials, including interviews with people from a wide range of backgrounds talking about why they took part in a trial, what information they needed, and what it was like for them.

It also contains further information about clinical trials such as “What are Clinical Trials and why do we need them?; Different types of Clinical Trial; Being asked to take part.

NHS Choices - Has a section on Getting Involved in Research including what questions to ask.

UK Clinical Research Network (UKCRN) – They also have information on their website which gives you further information on Clinical Trials and they have a number of booklets available to download including "Understanding Clinical Trials” and “Clinical Trials: What they are and what they’re not” .

Please click here to visit the PPI page of the UKCRN website, which contains links to these booklets.

In addition a booklet on use of your health records in research has been produced by the National Institute for Health Research.

Patient and Public Involvement in Research (PPIRes)

The PPIRes project is a local initiative to enable patients, services users and members of the public to get involved in all aspects of the research process – from decisions on what research should take place and commenting on research documentation to the interpretation and dissemination of research findings.
Please click here for further information on PPIRes and how to become a member.

NHS Employees as research subjects

If you are an NHS employee or an independent contractor working with NHS patients or clients (e.g. a GP, practice nurse, dentist, pharmacist) you may be approached to take part in a piece of research by virtue of your role as an NHS employee or independent contractor. This could range from a simple questionnaire based study, through to a study involving staff interviews, focus groups or observation of practice. The following page gives you more information about what issues you might want to think about before taking part.