Our links page includes details of research websites and organisations that might be helpful for researchers and members of the public who have an interest in active public involvement in research.
The links can be searched by clicking on one of the letters below or browsing all links.
If you would like us to add a link to your website, you’ll find a form and information on the type of links we publish on our Add your link page.
INVOLVE is not responsible for the content or reliability of the linked websites and does not necessarily endorse the views expressed within them.
healthtalk.org, run by the DIPEx charity, lets you share in other people’s experiences of health-related conditions and illnesses. You can watch video or listen to audio clips of the interviews, read about people’s experiences and find information about conditions, treatment choices and support. The research that appears on the site is produced by the Health Experiences Research Group at the University of Oxford’s Nuffield Department of Primary Care.
Healthwatch England is the independent consumer champion for health and social care in England. With a network of 152 local Healthwatch, they work to make sure that the overall views and experiences of people who use health and social care services are heard and taken seriously at a local and national level.
The IDEAL Collaboration is an international group working on ways to improve the reliability, relevance and fundability of research in surgery, medical devices and other complex or innovative interventions in healthcare. The Collaboration is directed by an international Steering Group of surgeons and researchers in surgical and other innovative complex interventions, research methodologists, statisticians, journal editors and experts in the translation of research into clinical practice. We invite interested members of the public and patient advocacy groups to get involved with helping us to improve surgical research – register your interest.
IDEA is an online learning centre to improve the care and quality of life of people with dementia. It is a one-stop website where you will find information and resources including online courses and a range of audio-visual materials about dementia, its causes, treatment and the care of people affected. There are also forums where carers and professionals can share good practice in the area of dementia care. The University of Nottingham Patient and Public Involvement group for people with dementia and their carers provided feedback on IDEA during the piloting phase. This is also a useful resource for researchers who are actively involved with people with dementia and their carers.
Independent Cancer Patients’ Voice (ICPV) is a patient advocate group led by patients for patients. We believe that clinical research is improved by patients being partners with clinicians and healthcare professionals, rather than passive recipients of healthcare. By bringing the views and experience of cancer patients, their family and carers, to the cancer research community, we aim to improve outcomes and develop new treatments for every cancer patient.
This INVOLVE online resource is a directory of networks, groups and organisations that support active public involvement in NHS, public health and social care research. The resource allows individuals or networks, groups or organisations to be aware of and make contact with others who are carrying out similar work.
Involving People supports public involvement in health and social care research across Wales.
We provide members of the public who live in Wales with information, support, training and opportunities for active involvement in research projects. Researchers based in Wales can obtain advice on active involvement and be linked to members of the public who are passionate about research.
This is the website for the Consumer and Community Participation Program, a joint venture between the University of Western Australia’s School of Population Health and the Telethon Kids Institute. Its aim is to support consumers, community members and researchers to work together to increase and enhance consumer and community participation in research.
The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together to identify and prioritise the top 10 uncertainties, or ‘unanswered questions’, about the effects of treatments that they agree are most important.
The Joseph Rowntree Foundation is an endowed charity that funds a large, UK-wide research and development programme. It seeks to understand the root causes of social problems, to identify ways of overcoming them, and to show how social needs can be met in practice.
The King’s Fund is a charity that seeks to understand how the health system in England can be improved. It works with individuals and organisations to shape policy, transform services and bring about behaviour change.
The Methodology Research Programme (MRP) supports the development of new and improved systems and theories for health research. The programme is jointly funded by the National Institute for Health Research (NIHR) and the Medical Research Council (MRC) and is managed by the MRC on behalf of the NIHR-MRC partnership. The MRP Panel meets twice a year to review grant applications.
The Multiple Sclerosis (MS) Society Research Network helps the MS Society make sure that the research it funds reflects the needs and interests of people living with MS. The Research Network also helps make sure that research is communicated in a way that is accessible to everyone in the MS community. It is open to anyone interested in research who has experience of living with MS or caring for someone with MS.
The National Health Service Research and Development (R&D) Forum is a network for those involved in managing and supporting R&D in health and social care. The Forum aims to improve the environment for health research by facilitating and encouraging sharing of best practice, and working with other organisations. Membership of the Forum is free and open to anyone involved in or interested in managing and planning research and development in the NHS.
NICE Evidence Search is an online service that brings together a wide range of medicines and prescribing information for healthcare professionals involved or interested in commissioning, managing, prescribing, dispensing and administering drugs.
The National Institute for Health and Care Excellence (NICE) provides guidance, sets quality standards and manages a national database to improve people’s health and prevent and treat ill health. NICE involves patients, carers and the public in the development of its guidance and other products.
The mission of the National Institute for Health Research (NIHR) is to maintain a health research system in which the NHS supports outstanding individuals, working in world class facilities, conducting leading edge research focused on the needs of patients and the public. The NIHR is is a large, multi-faceted and nationally distributed organisation, funded through the Department of Health (DH) to improve the health and wealth of the nation through research. Professor Dame Sally Davies, as the Director General for Research and Development at DH, is responsible for NIHR.
The National Institute for Health Research (NIHR) Biomedical Research Units (BRUs) undertake translational clinical research in priority areas of high disease burden and clinical need. The BRUs are based in leading NHS organisations and universities enabling some of our best health researchers and clinicians to work together to develop new treatments for the benefit of patients.
The Central Commissioning Facility (CCF) manages the following NIHR research programmes: Programme Grants for Applied Research; Research for Patient Benefit (RfPB); and Invention for Innovation (i4i). Patient and public involvement is core to CCF’s review and commissioning process.
The Centre for Reviews and Dissemination is part of the National Institute for Health Research (NIHR) and is a department of the University of York. We provide research-based information about the effects of health and social care interventions via our databases and undertake systematic reviews evaluating the research evidence on health and public health questions of national and international importance. The findings of our research outputs are widely disseminated and have impacted on health care policy and practice, both in the UK and internationally.
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21 August, 2019