Public involvement in MRC research
Here is a summary of the various ways in which members of the public have direct input to our scientific activities, including direct involvement in clinical trials and other studies aimed at improving health.
- MRC and patient and public involvement
- The MRC Public Panel
- Involvement as research participants
- Find out more
Since 2000 the MRC has used a number of mechanisms for promoting effective and appropriate public involvement in its research and policy-making activities. Starting life as the MRC’s Consumer Liaison Group, and becoming the Advisory Group for Public Involvement (AGPI) in 2003, the group’s main role was to advise the MRC on ways in which it can involve the general public and patients in its activities, and specifically gave in-depth consideration to topics that would benefit from group discussion. Members were recruited through national advertising and various networks. The group played a vital role in ensuring that the MRC became more aware of the public’s interests and concerns about medical research
AGPI/CLG were involved in a wide range of MRC activities including:
- Commenting on corporate publications and on patient information leaflets submitted as part of proposals for clinical trials.
- Contributing to MRC responses to government consultation documents.
- Attending MRC board strategy meetings.
- Participating in research reviews, such as on autism research.
- Serving on and advising a variety of MRC committees such as the Water Fluoridation Working Party and the CJD Working Group.
- Commenting on MRC submissions to other organisations’ consultations.
- AGPI members sat on the steering group for a consultation on ageing research commissioned in 2006 by the MRC and the Biotechnology and Biological Sciences Research Council.
In 2007 The MRC expanded the role of AGPI by setting up a Public Panel, which gives access to a broader range of public views and makes use of a wide range of experience and expertise. This builds on the successful use of lay experts from a particular community for one-off projects that run for a limited period.
The panel consists of people from all walks of life who have an interest in different aspects of medical research – perhaps by association with a medical research charity or through personal experience. The main criterion is that their individual expertise is the ‘right match’ for the task.
In some instances, such as the National Prevention Research Initiative and the MRC Autism Research Steering Group, where the group is tasked with allocating a ring-fenced amount of funding for projects, the lay members take an active part in reviewing and scoring applications.
Find out more about the Public Panel.
Current and recently completed projects involving lay members:
- Motor Neuron Disease Association/MRC joint workshop
- Patient Research Cohorts Initiative
- UK stem cell bank steering committee
- National Prevention Research Initiative
- UK Biobank Ethics and Governance Council
- UK Stem Cell Bank Management Committee
- MRC Ethics Policy Advisory Committee
- New Therapeutics Scrutiny Committee for Prion Disease (including BSE/CJD and vCJD)
- Development of a research strategy for CFS/ME
We also work with other research partners and organisations on patient and public involvement projects. This enables us to tap into best practice and emerging philosophies and models, and to support the work they do with the wider public. Examples of such joint activities include:
- The UK Clinical Research Collaboration (UKCRC), including participation in the UKCRC patient and public involvement project group
- Observer status on the NHS patient involvement group INVOLVE
- The James Lind Alliance
Clinical trials of new medical treatments and interventions rely on the expertise and commitment of the researchers themselves and a range of other healthcare professionals. But most important of all are the people who volunteer to take part. They play an essential part in helping scientists to develop and test treatments for the benefit of everyone in the community. Participating in MRC-funded clinical trials and population studies is one of the most valuable ways in which you can support our work to improve health.
If you are interested in finding out more about the ways in which the MRC involves patients and the wider public in its work, please contact: