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| INVOLVE (NIHR) | |
|---|---|
| Name | INVOLVE (NIHR) |
| Formation | 1996 |
| Type | Advisory body |
| Headquarters | United Kingdom |
| Parent organisation | National Institute for Health and Care Research |
| Region served | United Kingdom |
INVOLVE (NIHR) INVOLVE (NIHR) was a United Kingdom advisory body supporting public involvement in health and social care research. Established to promote participation by patients, carers and service users in research, INVOLVE provided guidance, resources and advocacy within the framework of the National Institute for Health and Care Research and the broader landscape including National Health Service, Medical Research Council, Wellcome Trust, Health and Social Care Act 2012, and stakeholder networks across the United Kingdom. Its remit intersected with policy actors such as the Department of Health and Social Care, funders like Cancer Research UK, and academic institutions including University of Oxford, University of Cambridge, and University College London.
INVOLVE originated during a period of reform influenced by inquiries and reports including the Cochrane Collaboration debates, the Calman-Hine Report, and the rise of patient advocacy groups such as Action for Pulmonary Fibrosis, Mencap, and Macmillan Cancer Support. Early collaborations involved organisations like the Royal College of Physicians, Royal College of General Practitioners, King's Fund, and charities such as British Heart Foundation and Alzheimer's Society. Influential figures and institutions in its evolution included researchers from Imperial College London, grant makers like the National Institute for Health Research leadership, and public involvement exemplars from Liverpool School of Tropical Medicine and London School of Hygiene & Tropical Medicine. Over time INVOLVE’s trajectory was shaped by policy frameworks including the NHS Constitution (UK), reports by the House of Commons Health Committee, and initiatives led by NICE and Public Health England.
INVOLVE’s mission emphasized active participation by laypeople in research priority-setting, design and dissemination alongside stakeholders such as Nuffield Trust, Age UK, Citizens Advice, Scottish Government, Welsh Government, and Northern Ireland Department of Health. Objectives aligned with national funders including Medical Research Council, Economic and Social Research Council, Arts and Humanities Research Council, and charities like Stroke Association and Diabetes UK to embed public involvement in projects at institutions such as University of Edinburgh, University of Glasgow, University of Manchester, and University of Birmingham. It promoted standards resonant with guidance from World Health Organization, statutory guidance by Care Quality Commission, and professional bodies like General Medical Council and Health Research Authority.
Operational governance incorporated advisory panels, lay members, and representatives from bodies such as Research Councils UK, NIHR Clinical Research Network, Clinical Trials Units, and academic departments including Queen Mary University of London and Newcastle University. Board-level oversight connected with Department of Health and Social Care mechanisms, reporting relationships analogous to those used by Medical Research Council and NHS England. INVOLVE convened working groups comprising stakeholders from Royal Society, Academy of Medical Sciences, British Medical Association, and patient organisations such as YoungMinds and Royal British Legion to advise on practice, ethics and governance.
INVOLVE developed resources, training and guidance used by researchers at institutions including University of Southampton, University of Leeds, University of Bristol, University of Nottingham, and networks like the James Lind Alliance. Programmes included public involvement in clinical trials overseen by units such as MRC Clinical Trials Unit, translational research initiatives linked to Biomedical Research Centres, and service evaluations conducted with partners like Local Government Association and NHS Improvement. It supported capacity-building through workshops with professional bodies such as Royal College of Nursing, Royal College of Psychiatrists, Royal College of Paediatrics and Child Health, and collaborative events featuring funders such as Wellcome Trust and Cancer Research UK.
Evaluations referenced studies from universities including University of Exeter, systematic reviews in collaboration with entities such as the Cochrane Collaboration, and policy analyses by think tanks like King's Fund and Nuffield Trust. Reported impacts included improved research relevance cited by teams at University of Oxford, enhanced recruitment in trials associated with NIHR Clinical Research Network, and changes to funding criteria at Medical Research Council and National Institute for Health and Care Excellence. External scrutiny and assessment drew input from bodies such as Health Foundation, Nesta, RAND Corporation, and academic journals like The Lancet, BMJ, and PLOS Medicine.
INVOLVE partnered with a broad array of organisations including academic partners University of York, University of Sheffield, policy bodies Department of Health and Social Care, funders Wellcome Trust, British Heart Foundation, service providers NHS England, and third-sector organisations such as Mind, Shelter (charity), and Cancer Research UK. International links involved dialogues with World Health Organization, comparative initiatives in Canada, Australia, and European networks including European Commission programmes and collaborations with institutions like Karolinska Institutet and Institut Pasteur.
Critiques addressed issues raised by commentators in outlets like The Guardian, academic critiques from universities such as University of Kent and University of Nottingham, and debates involving professional associations like British Medical Journal contributors and members of Health Research Authority. Controversies concerned representativeness of lay panels compared with demographic data from Office for National Statistics, perceived tokenism highlighted by advocacy groups including People in Research and calls for more equitable resourcing from organisations such as Joseph Rowntree Foundation. Discussions also referenced tensions with funding priorities of Medical Research Council and operational constraints noted by NIHR Biomedical Research Centres.