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.
Alzheimer’s Society Research Network is a team of carers, former carers and people with dementia who play an integral role in the research programme.
The mission of Athena is to scientifically study and design interfaces between science and society. The Institute works on a great diversity of projects concerning patient and public involvement.
The Balance Enhancement and Ulcer Prevention (BEUP) website aims to increase public and patient involvement within the research programme by providing a public friendly information centre and point of contact. The group’s collaborative long-term aim is to translate the results from its published research into everyday clinical practice for the benefit of patients with diabetes (and peripheral neuropathy).
Included within the site is a section including details of the patient and public research steering group and a section about how patients and the public might get involved in the research programme.
Bradford Alliance on Community Care (BACC) was set up in 1989 by community and voluntary groups and organisations to strengthen the voices of community care service users and carers in the planning of health and social care services across the Bradford Metropolitan District.
The site contains information on the rare disease work the unit facilitates. Importantly it has a section on Public Patient Engagement to help researchers
Cancer Voices is a UK-wide network of people affected by cancer who are helping to shape the future of cancer care supported by Macmillan Cancer Support.
The Center for Evidence-based Policy at Oregon Health & Science University is a national leader in evidence-based decision making and policy design. A core element of patient-centered outcomes research is involving patients, caregivers, and members of the public as partners in research.
Centre for Mental Health aims to help to create a society in which people with mental health problems enjoy equal chances in life to those without. It carries out research, policy work and analysis to improve practice and influence policy in mental health as well as public services.
The Cochrane Consumer Network (CCNet) exists to support health care users, their parents and carers learn about evidence-based healthcare. It encourages consumers throughout the world to give their perspectives and help set priorities for health care. CCNet promotes user input into and acceptance of evidence-based healthcare to guide well-informed decisions about health care.
The Cochrane Library is a collection of six databases that contain different types of high-quality, independent evidence to inform healthcare decision-making, and a seventh database that provides information about groups in The Cochrane Collaboration. The Cochrane Library includes: the Cochrane Database of Systematic Reviews, the Database of Abstracts of Reviews of Effects and the Cochrane Central Register of Controlled Trials.
Contact, Help, Advice and Information Network (CHAIN) is an online mutual support network for people working in health and social care. It is based around specific areas of interest, and gives people a simple and informal way of contacting each other to exchange ideas and share knowledge.
This site contains material produced by and for the Department of Health. It includes press releases and details of Department of Health publications, as well as information about the Department of Health and NHS Executive.
Real life diabetic experiences with diabetes knowledge in fitness, exercise programs, low-carb diets and nutrition to help people manage blood sugar levels.
The EQUATOR Network is an international initiative that seeks to enhance reliability and value of medical research literature by promoting transparent and accurate reporting of research studies.
Europe PubMed Central is a free information resource for biomedical and health researchers. It includes over 28 million searchable abstracts and 2.6 million full text research articles.
ECRAN aims to improve EU citizens’ knowledge about medical research and support their participation in clinical trials. The site has videos about clinical trials, games, and a searchable inventory of resources.
This European consortium project, funded by the Innovative Medicines Initiative, will provide scientifically reliable, objective, comprehensive information to patients on medicines research and development. It will increase the capacities and capabilities of well-informed patients and patient organisations to be effective advocates and advisors in medicines research.
Launched in October 2006, the Experimental Cancer Medicine Centre (ECMC) Network is jointly supported by Cancer Research UK and the Departments of Health for England, Scotland, Wales and Northern Ireland, to fund a network of Experimental Cancer Medicine Centres across the UK. The goal of the ECMC Network initiative is to drive the development of new therapies to bring benefits to patients faster.
Folk.us works to support and develop patient, service user and carer involvement in health and social care research activities to ensure that those who use services and those who care for those who use services inform and guide research at all stages.
The Health Research Authority (HRA) was established in December 2011 to protect and promote the interests of patients and the public in health research, and to streamline the regulation of research. It is committed to involving patients and the public in its work.
Funded by the Department of Health and managed by the National Healthcare-Associated Infection Research Network (HCAI RN), Service Users Research Forum (SURF) provides a forum for members of the public to find out more about HCAI research and supports their involvement by ensuring they are able to make a valid and meaningful contribution to the research process. SURF also provides an opportunity for researchers and healthcare professionals to work in collaboration with service users, their carers and members of the public to improve current research, widely disseminate findings and identify the most important areas for future research.
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.
Our goal is to spread the word about mesothelioma, a rare cancer that affects protective membranes surrounding lungs, heart and abdominal cavity that’s mainly caused by asbestos exposure. We provide free informational books, packets and a Patient Advocacy program that works 1-on-1 with individuals to help them find local doctors, treatment centers and support groups.
Our organization is a resource to help anyone suffering from mesothelioma find free care and support.
Please take a look at some of the great information we have.
At the Mesothelioma Fund our mission and primary focus is to support mesothelioma victims and their families through their journey. We help through communication, compensation and care. We have partnered with medical experts to provide clients with information kits about the disease, treatments and financial options. We also help asbestos-exposure victims determine the sites and years of exposure, obtain the necessary physician certifications, and secure the critical documentation to ease the process of asbestos bankruptcy trust claims. We have worked collaboratively with the leading physicians and cancer centers in the country so our patients can have access to cutting-edge treatments and pioneering clinical trials.
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.
The National Institute for Health Research (NIHR) Clinical Research Network provides the infrastructure that allows high-quality clinical research to take place in the NHS, so that patients and the public can benefit from new and better treatments. This site provides information on how the Clinical Research Network is: helping researchers to set up clinical studies quickly and effectively; supporting the life-sciences industry to deliver their research programmes; providing health professionals with research training; and working with patients to ensure their needs are at the very centre of all research activity. The Clinical Research Network comprises 15 local Clinical Research Networks that cover the length and breadth of England. Each local Clinical Research Network delivers research across 30 clinical specialties.
NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) undertake high-quality applied health research focused on the needs of patients and support the translation of research evidence into practice in the NHS. CLAHRCs are collaborative partnerships between a university and the surrounding NHS organisations, focused on improving patient outcomes through the conduct and application of applied health research.
The Efficacy and Mechanism Evaluation (EME) programme was launched in April 2008. It was created as part of the National Institute for Health Research (NIHR) and the Medical Research Council (MRC) coordinated strategy for clinical trials. The EME programme is broadly aimed at supporting ‘science driven’ studies with an expectation of substantial health gain and aims to support excellent clinical science with an ultimate view to improving health or patient care.
NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) is home to a growing number of research programmes and is part of the National Institute for Health Research (NIHR). It is based at the University of Southampton Science Park and was established in April 2008. NETSCC manages the following research programmes: Health Technology Assessement; Public Health Research; Efficacy and Mechanism Evaluation; Health Services and Delivery Research; Systematic Reviews and NIHR Clinical Trials Unit (CTU) Support Funding.
The Faculty is at the heart of the NIHR, it includes all of the NIHR funded people working in the NHS, universities and registered charities in England, who generate research ideas in clinical and applied healthcare research, lead or support this research, and evaluate the effectiveness of healthcare interventions and policies. It is a vibrant research community with members exchanging ideas about research and innovation to improve the health and well-being of the nation.
The HS&DR programme funds research to improve the quality, effectiveness and accessibility of the NHS. It aims to produce rigorous and relevant evidence on the quality, access and organisation of health services, including costs and outcomes. The HS&DR programme is the result of the merger of two former NIHR programmes, the Health Services Research programme (HSR) and the Service Delivery and Organisation programme (SDO). The aims of both programmes are being carried forward into the HS&DR programme.
The National Institute for Health Research Health Tecnology Assessment (HTA) programme funds independent research about the effectiveness, costs and broader impact of healthcare treatments and tests for those who plan, provide or receive care in the NHS.
The National Institute for Health Research Horizon Scanning Research & Intelligence Centre aims to supply timely information to key health policy and decision-makers within the NHS about emerging health technologies that may have a significant impact on patients or the provision of health services in the near future. The scope of the horizon scanning activity includes pharmaceuticals, medical devices and equipment, diagnostic tests and procedures, therapeutic interventions, rehabilitation and therapy, and public health activities.
The Invention for Innovation (i4i) programme aims to support and advance the development of innovative medical technologies for the benefit of patients in the NHS in England and Wales.
The National Institute for Health Research (NIHR) Office for Clinical Research Infrastructure (NOCRI) has been set up to help public, charity and industry research funders work in partnership with NIHR infrastructure. It also ensures that NIHR-supported Centres, Units, Facilities and Networks can work together to help drive the flow of innovative research for patient benefit.
NIHR Programme Grants for Applied Research (PGfAR) were established in 2006 to produce independent research findings that will have practical application for the benefit of patients and the NHS in the relatively near future. Within the PGfAR programme is the Programme Development Grants scheme, the primary purpose of which is to allow investigators to undertake preparatory research that will position them to submit a competitive Programme Grant application.
The NIHR Public Health Research (PHR) programme funds research to evaluate non-NHS interventions intended to improve the health of the public and reduce inequalities in health. The scope of the programme is multi-disciplinary and broad, covering a wide range of interventions that improve public health.
The NIHR Research Design Service (RDS) supports researchers to develop and design high quality research proposals for submission to NIHR and other national, peer-reviewed funding competitions for applied health or social care research. There are ten NIHR Research Design Service, one in each Strategic Health Authority area.
Research for Patient Benefit (RfPB) is a national, response-mode programme established in 2006 to generate high quality research for the benefit of users of the NHS in England. It funds regionally-derived applied research projects in health services and social care. Its main purpose is to realise, through evidence, the huge potential for improving, expanding and strengthening the way that healthcare is delivered for patients, the public and the NHS.
The National Institute for Health Research (NIHR) School for Primary Care Research is a partnership between eight leading academic centres for primary care research in England. The School’s main aim is to increase the evidence base for primary care practice through high quality research and strategic leadership.
Established in April 2012 with a budget of £20 million over five years, the NIHR School for Public Health Research (SPHR) is a partnership between eight leading academic centres with excellence in applied public health research in England. The School is committed to ensuring that the public are involved in the development and conduct of all its research projects.
The School for Social Care Research, funded by the National Institute for Health Research, formally began work in May 2009. Led by Professor Martin Knapp with a budget of £15 million over five years, the SSCR is a partnership between six leading academic centres in social care research in England. SSCR has received a further five year’s funding from the National Institute for Health Research from 1 May 2014.
The NIHR Trainees Coordinating Centre (NIHR TCC) makes training awards to researchers whose work focuses on people and patient-based applied health research. The NIHR funds this research training in order to build a leading NHS Research Faculty, develop research careers, research leaders and collaborators.
The UK Cochrane Centre (UKCC) was established at the end of 1992, by the National Health Service Research and Development Programme and is now part of the National Institute for Health Research. We provide training and support to Cochrane entities and contributors to The Cochrane Collaboration in the UK, Ireland, and some other countries; act as a knowledge broker for Cochrane reviews; and run a programme of methodology research and audit. We are a key link between the Collaboration, Cochrane reviews, and the National Health Service.
The National Research Ethics Service (NRES) is committed to enabling and supporting ethical research in the NHS. NRES protects the rights, safety, dignity and wellbeing of research participants. It is a core function and directorate of the Health Research Authority.
NHS Choices provides a comprehensive health information service that helps people make choices about their health, from decisions about lifestyle, such as smoking, drinking and exercise, to finding and using NHS services in England. It includes around 20,000 regularly updated articles together with videos, interactive tools and listings.
NHS Involvement brings people together to give the public more opportunities to take part in healthcare decision-making, as well as information about services. It offers people who work in engagement the support, guidance and contacts to reach deeper into communities and make a real difference. Involvement is a Patient and Public Participation (PPP) programme which Midlands and Lancashire Commissioning Support Unit has been commissioned to deliver by NHS England.
The North West People in Research Forum (NWPiRF) is devoted to supporting patient and public involvement and public engagement in health and social care research in the North West of England. The NWPiRF website includes: information, guidance, good practice examples, relevant websites and more for members of the public and researchers; information about news, developments and events in public involvement and engagement in research; and opportunities for members of the public to become actively involved in health and social care research.
Our Research Involvement Network is a group of people who each have a personal connection to pancreatic cancer, including patients, carers, loved ones and survivors. The group has a diverse range of views and experiences and can provide researchers with insights that inform and shape their work. This ensures that only the highest quality research is being conducted.
The Partnership for Research in Chronic Fatigue Syndrome and Myalgic Encephalopathy (PRIME) Project was a collaboration between patients, carers, researchers and service providers who wanted to improve our understanding of Myalgic Encephalopathy (ME) / Chronic Fatigue Syndrome (CFS). This website provides access to a database of PRIME research material for use by people living with ME/CFS, and those that care for and treat them.
Patients Active in Research promotes partnerships between patients, carers, other members of the public, and medical researchers in the Thames Valley. It has been developed with patients and aims to ensure that medical research focuses on what really matters to those affected by ill health and is carried out in ways that encourage them to take part.
The Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) responds to questions from families about therapies and health services for children and young people affected by disability or who have special or additional health needs. PenCRU provides summaries of the evidence to help families make decisions. Where the evidence is lacking it seeks funding to conduct clinical trials to assess the effectiveness of interventions. PenCRU involves families affected by childhood disability in all aspects of its research and related activities.
People in Research helps members of the public make contact with organisations that want to actively involve them in clinical research. For example this could be by helping to decide what gets researched or possibly carrying out part of the research.
Public Health England (PHE) works with national and local government, industry and the NHS to protect and improve the nation’s health and support healthier choices. They work to address inequalities by focusing on removing barriers to good health. PHE is an executive agency of the Department of Health.
PEAR – which stands for Public Health, Education, Awareness, Research – was an National Children’s Bureau Research Centre project supporting young people’s involvement in public health research. The project ran from 2008 to 2010, supported by the Wellcome Trust. The PEAR project has now finished, but you can find out about its work and access resources on these webpages.
Public Health Online is dedicated to those researching educational opportunities within public health to help make the decision to get a degree, go back to get a degree, or further their education with a master’s or doctoral degree in public health. We also offer a variety of resources to include mental health topics and nicotine and vaping cessation.
The Research Governance Framework for Health and Social Care (RGFHSC), available on the Department of Health website, sets out the broad principles of good research governance and is key to ensuring that health and social care research is conducted to high scientific and ethical standards.
Shaping Our Lives National User Network is an independent user-controlled organisation, think tank and network.
This website, aimed at user controlled organisations, is for finding out about what service user organisations are doing and also what non-service user organisations are doing for service users.
The Social Care Institute for Excellence (SCIE) improves the lives of people who use care services by sharing knowledge about what works. It works with adults, families and children’s social care and social work services across the UK and with related services such as health care and housing. SCIE gathers and analyses knowledge about what works and translates that knowledge into practical resources, learning materials and services.
Social Care Online is a portal to a collection of information on social work and social care. It covers research briefings, reports, government documents, journal articles, events and websites and is updated daily.
This website provides information about the purpose of the Social Care Research Ethics Committee (REC), how to apply for research ethics review, and who to contact for further help.
The Social Perspectives Network is a coalition of service users/survivors, carers, policy makers, academics, students, and practitioners interested in how social factors both contribute to people becoming distressed, and play a crucial part in promoting people’s recovery.
This website is about how we tell whether one treatment is better than another. It contains the full text of the 2nd edition of the book Testing Treatments. It also contains links to additional resources, which help to explain and illustrate the principles and messages contained in the book.
Trip is a clinical search engine designed to allow users to quickly and easily find and use high-quality research evidence to support their practice and/or care.
The UK Clinical Research Collaboration (UKCRC) brings together the NHS, research funders, industry, regulatory bodies, Royal Colleges, patient groups and academia in a UK-wide environment that facilitates and promotes high quality clinical research for the benefit of patients.
The UK Clinical Trials Gateway provides easy to understand information about clinical research trials running in the UK, and gives you and others access to a large range of information about these trials.
The Warwick Diabetes Research and Education 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 Warwick Medical School in all aspects of diabetes research and education. Its purpose is to advise about, rather than take part in studies or teaching.
The Wellcome Trust is a global charitable foundation dedicated to achieving improvements in human and animal health. Their support includes public engagement, education and the application of research to improve health.
The Netherlands Organisation for Health Research and Development (ZonMw) is a funding agency for health research. The participation of patients and health consumers has always played an important role in the organisation’s work.