More information

The links on this page will take you to the websites of organisations that have an interest in active patient and public involvement in research.
If you know of a web site that would be a useful addition to this page please contact Philippa Yeeles

Alzheimer’s Society – Quality Research in Dementia
The Quality Research in Dementia Programme (QRD) is an active partnership between carers, people with dementia and the research community. QRD actively involves people with dementia and their carers in setting the research agenda, awarding grants and assessing outcomes.

  
Clinical Research Collaboration Cymru
Cynnwys Pobl/Involving People is developing patient, service user and carer involvement into the strategy, development and implementation of health and social care research in Wales.

 
Cochrane Consumer Network
The Cochrane Consumer Network is part of the Cochrane Collaboration. It provides a coordinating network supporting consumers within Cochrane Groups, as well as working to improve the quality of reviews, and make reviews more accessible to consumers.

 
Community-Campus Partnerships for Health (CCPH)
CCPH promotes health (broadly defined) through partnerships between communities and higher educational institutions in North America.  CCPH is a growing network of over 1,200 communities and campuses across North America and increasingly the world that are collaborating to promote health through service-learning, community-based participatory research, broad-based coalitions and other partnership strategies.

 
Dementias & Neurodegenerative Diseases Research Network (DeNDRoN)
DeNDRoN is part of the UK Clinical Research Network. Patient and public involvement play a pivotal role in ensuring that DeNDRoN supports clinical research that is of the highest quality, and is of direct relevance to people affected by these diseases, including dementia, Parkinson’s disease, motor neurone disease and Huntington’s disease. There are opportunities to get actively involved in DeNDRoN.

 
Diabetes Research Network
The Diabetes Research Network is part of the UK Clinical Research Network.  The Diabetes Research Network plans to improve the coordination and quality of research into Type 1 and Type 2 diabetes by creating a more effective research environment to improve diabetes care and ensuring that research remains relevant to the needs of those affected by diabetes.  There are opportunities to get actively involved in the Diabetes Research Network.

 
Folk.us
Folk.us is a Department of Health funded initiative which was established to facilitate and promote meaningful and effective service user, patient and carer involvement, in all types of research relating to health and social care in North and East Devon.

 
Health R&D North West
Health R & D North West is a collaboration between three research-led Universities: Lancaster, Liverpool, and Salford. They have an Research and Development Manager with a specific remit of supporting and developing user involvement in their research and have developed The North West Users Research Advisory Group (NWURAG).

 
INVOLVE
INVOLVE is funded by the Department of Health to promote and support active public involvement in NHS, public health and social care research.  INVOLVE believes that involving members of the public leads to research that is more relevant to peoples needs and concerns, more reliable and more likely to be used

 
James Lind Alliance
A coalition of organisations representing patients and clinicians collaborating to confront important uncertainties about the effects of treatments.

 
NHS Centre for Involvement
The NHS Centre for Involvement supports NHS organisations and staff to create services that are directly shaped by the views and experiences of patients and the public.

 
NHS Health Technology Assessment Programme
The HTA programme has been actively involving service users in all stages of its process since 1997. The programme works to provide all those who make decisions in the NHS with high-quality information on the costs, effectiveness and broader impact of health care treatments and tests. Details of the different ways the public are involved in the HTA programme are described on their web site.

 
Medicines for Children Research Network
The Medicines for Children Research Network is part of the UK Clinical Research Network.  The Network has an Adult Consumer Liaison Group that provides a place to discuss and debate on patient and public involvement in the planning and organisation of research that involves children in the NHS. There are opportunities to get actively involved in the Medicines for Children Research Network.

 
Medical Research Council
The Medical Research Council seeks the views of people beyond the scientific community to comment on its activities and influence decision making.  This is done in a variety of ways ranging from using existing research on consumer views to participation on committees and establishment of lay groups to support specific initiatives.

 
MS Society Research Network
The MS Society Research Network was launched in 2002.  It has 148 members all of whom have experience of living with multiple sclerosis or caring for a person with multiple sclerosis.

 
National Cancer Research Network
The National Cancer Research Network (NCRN) is part of the UK Clinical Research Network.  The NCRN provides the NHS with the infrastructure to support cancer clinical trials in England. It aims to improve the speed, quality and integration of research with the ultimate aim of improving patient care. There are opportunities to get actively involved in the National Cancer Research Network.

 
National Institute for Health and Clinical Excellence (NICE)
NICE makes recommendations on treatments and care using the best available evidence. NICE is committed to producing guidance for the NHS that meets the needs of patients, carers and the public and that involves patients, carers and the public in its development. There are opportunities for patient, carer and public involvement at a number of levels.

 
National Institute for Health Research – Central Commissioning Facility
The Department of Health established the National Institute for Health Research (NIHR) to oversee the direction of publicly funded health research in England. The NIHR is committed to establishing the NHS as an internationally recognised centre of research.  The Central Commissioning Facility (CCF) was set up in 2006 to manage and administer the NHS National Research and Development Programme for the NIHR.  Both organisations are committed to active involvement in all stages of research and there are opportunities to get involved.

 
North Trent Cancer Research Network – Consumer Research Panel
The Consumer Resarch Panel engages consumers, both cancer patients and carers, in the process of research into the causes, treatment and palliation of cancer illnesses. Members of the panel have helped with many aspects of cancer research. They sit on local and national committees which oversee the work of cancer researchers, are members of the steering groups for research protocols and clinical trials, offer advice on the day to day running of cancer units and the work of the professionals involved, and help produce better information and care for patients based on their own experiences.

 
Royal College of Physicians
The College has a Patient Involvement Unit that supports and promotes patient, carer and public involvement in College activities. The College has created a Patient and Carer Network to ensure that the interests of patients, carers and the wider public are fully integrated in the work of the College. There are approximately 70 members - patients, carers and members of the general public from a range of backgrounds and across a wide geographic spread.

 
Scottish Executive Health Department – Chief Scientist Office
The Chief Scientist Office has a Public Involvement Group made up of business people, academics, carers, local health council members and individuals who want to give something back to the NHS. These volunteers have joined committees and groups and are also represented on review groups, fellowship panels and at any research days or workshops.

 
Stroke Research Network
The Stroke Research Network is part of the UK Clinical Research Network.  The Network supports stroke research which will potentially benefit stroke patients and carers by working with patients and carers and supporting active involvement of patients and the public in research. There are opportunities to get actively involved in the Stroke Research Network.

 
Service User Research Group England (SURGE)
SURGE is the service user arm of the UK-Mental Health Research Network (MHRN).  SURGE is a national network set up to support mental health service users and people from universities and NHS trusts, as they work together on mental health research.  SURGE plays an important part in making sure research across the MHRN is valuable for and makes sense to service users. SURGE supports service user input to the MHRN through service user involvement in local hub committees, research project teams and at a national level.
 
Trials in Mental Health

The TriMe web site is for the UK general public.  It aims to give the public information about mental health research that is happening, so that they can think about getting involved and work out which research to get involved in. The website also aims to improve recruitment into high quality mental health research by improving communication between patients/public and those running the trials, and to improve public understanding of mental health research.

 

UK Clinical Research Network (UKCRN)
The UKCRN provides support for clinical research and to facilitate the conduct of randomised prospective trials and other well-designed studies. There is a range of opportunities for patients and the public to get involved with the work of UKCRN. Each individual topic specific clinical research network is developing its own programme of patient and public involvement activities.

 
Warwick Diabetes Care – Research User Group
The Warwick Diabetes Care Research User Group is a group of lay people who have an active interest in the diabetes control and care of people living with diabetes. Its main purpose is to assist the Warwick Diabetes Care Research Team in all aspects of diabetes research.