LAUSR

How many researchers, on completing their funding application documents, suddenly realise that they should have involved patients and public members earlier in the process? In the UK, INVOLVE is the national advisory group funded by the National Institute for Health Research (NIHR) to support public involvement (PI) in the NHS, public health and social care research. INVOLVE defines PI in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. INVOLVE describes three degrees of PI, from ‘engagement’, for example, sharing information at public open days, ‘participation’ such as recruitment to a clinical trial, through to full ‘involvement’, where members of the public are actively involved in research projects. ‘Coproduction’ is another PI term, describing a process whereby public members and professionals are involved on an equal footing throughout every stage of the design and delivery of research. Evidence of PI is required by many funding bodies, but why do we need it? I believe that PI can add a meaningful dimension to research, as long as the right structures and support are there at the right time. That is not to say that one size will fit all; nor should it be a static model. Lay people come from many backgrounds, volunteer for a variety of reasons and wish to be involved at different levels, and their personal circumstances may change over time. The ideal PI model should reflect the nature of the research and be regularly reviewed to meet the ongoing needs of the PI stakeholders. Research may only include one element of PI or a combination of several formats at various stages in the research cycle. Each stage could require a different level of support and organisation. Whilst it is difficult to quantify the impact of PI in research, it is acknowledged that public members provide an additional perspective. They offer independent nonacademic oversight, contributing their own knowledge and personal experiences as service users and carers, ensuring a patient focus throughout the research. Through PI, the quality and relevance of research should be improved. At an early stage, PI focus groups can assist in identifying and refining research topics and signpost researchers to appropriate patient networks. When developing a research proposal, PI can ensure that the proposed methodology will be acceptable to patients, leading to higher levels of participation. PI can assist with advice on recruitment strategies and informed consent, the language and content of patient information and the relevance of the research outcomes to the public. Following training, PI members can conduct participant interviews adding new insights due to their shared experiences; their views on a steering group will inform data analysis and interpretation; they can suggest dissemination channels more likely to reach the wider public. What are the pitfalls and challenges? Early public involvement is essential for successful PI. Otherwise, important patient networks may not be consulted, key people may be omitted, recruitment may be challenging, and response and retention rates will be suboptimal. If outcome measures are not relevant or important to patients and the public, the research is less likely to have impact, lead to implementation or change practice. This is not to say there will not still be other considerations. PI is time-intensive, and PI support takes much personal time from researchers. Timescales need to be built into the bid development to allow for full PI participation. There may be difficulties in recruiting and engaging with PI volunteers and service users. In managing diversity, researchers must be prepared to accommodate a range of literacy skills and medical conditions. Support structures, including training, and budgets for PI members will need to be established. And let us not underestimate the minefield of liaising with Finance Departments to obtain the timely reimbursement of PI expenses. Over the past 18 months, a UK-wide partnership, comprising the NIHR, the Chief Scientist Office (Scotland), Health and Care Research Wales and the Public Health Agency (Northern Ireland), has been developing a set of standards and indicators for public involvement (PI) in research.