Background INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research (NIHR), to support active public involvement in NHS, public health and social care research in England. It is one of the few government funded programmes of its kind in the world.
As a national advisory group its role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.
It has four Strategic Themes:
– Building and sharing the evidence base
– Developing capacity and capability
– Influencing policy and practice
– Leading on public involvement across the NIHR.
Members of the public and professionals with a special interest in patient and public involvement (PPI) within research are invited to apply to become members for a three year period.
Objectives To describe the patient and organisational perspective of the UK INVOLVE organisation.
Methods Members are asked to attend three one day meetings a year along with a two day symposium and a Biannual Conference. In addition to this they are invited to take part in extra meetings either face to face or by telephone to help in the production of further resources such as:
– Developing a directory of research networks and organisations supporting involvement known as invoDIRECT
– Updating the resources regarding payment for PPI along with other forms of reward and recognition allowable within the UK welfare system
– Producing an Equality and Diversity Statement and Policy for INVOLVE
– The production of a short animated film to encourage young people to get involved in research.
Results Since its inception INVOLVE has helped to provide advice and a large range of resources and guidance on PPI (patient and public involvement in research) both on their website: www.involve.nihr.ac.uk and in printed copies. They have held discussions on many of the emotive issues affecting PPI around the country including payment, training, diversity and the developing of PPI from a possible tokenistic model up to a model of real active involvement by encouraging a dialogue across all levels of professionals and members of the public.
Today the NIHR expects members of the public to be involved in the research they fund. Members of the public are also involved in reviewing research proposals and sitting on commissioning and funding boards and panels to support decision making.
Conclusions As a patient member of INVOLVE I have greatly increased my knowledge of PPI within all areas of health and social care. It has given me the means to network with a very wide diverse group of people and access their particular expertise within the PPI arena. INVOLVE itself as an organisation has managed a very fine balancing act of influencing PPI strategies throughout a whole network of professional organisations whilst still holding onto its own ethos and being the human face of PPI and it provides a safe and enjoyable place for patients to mix with professionals and really has an input into the development of health and social care research for the benefit of patients suffering with these conditions in the UK.
Disclosure of Interest None declared