The public voice has some representation at a strategic level within NIHR. The NIHR Advisory Board includes representatives from patient focused organisations and the NIHR Strategy Board, which advises on strategic issues relating to the management of the NIHR, includes both the Director of INVOLVE and the National Director for Patients and the Public in Research .
In terms of identifying priority areas for research, there are organisations that promote the public voice in agenda setting. For example, the James Lind Alliance Priority Setting Partnership , which is now part of the NIHR, brings patients, carers and clinicians together to identify and prioritise treatment uncertainties which they agree are the most important for research. Since 2007, these partnerships have identified the ‘Top 10’ research priorities in over 30 conditions ranging from acne to prostate cancer to palliative and end of life care .
There is some evidence of the impact of public involvement in setting priorities for asthma research . However, there is less evidence about the extent to which the issues prioritised by the public lead to funded research projects in other areas. Most of the NIHR programmes fund commissioned research (topic specified by the programme) as well as having open calls (topic specified by the researcher providing it is within the remit of the programme). The majority of projects funded fall under this latter category, i.e. they are researcher-led. Furthermore, the James Lind Alliance is just one of the bodies that feeds into the process of identifying key research questions for funding (see ). The net result is that the majority of NIHR funded projects are either researcher-led or are on topics at the forefront of policy priorities, e.g. the themed call for proposals on dementia in 2011 was linked to UK’s then Prime Minister David Cameron’s high profile ‘dementia challenge’.
In terms of decision-making about what projects are funded, the NIHR funding panels now all include lay representatives who have direct input into these decisions. In addition, prior to panel meetings, research proposals are sent to both peer and lay reviewers. Nearly 700 public contributors were involved in reviewing over 1000 applications received by the NIHR in 2013/2014 . There is thus clear evidence about involvement of the public in decision-making about which projects are funded. However, there remains concern about ‘tokenism’ and it is common to hear reports claiming that lay reviews are given less weight than peer-researcher/clinician reviews and also that the voice of public representatives on panels carries less influence than that of other members. There is though evidence to suggest that the influence of lay reviews and public representatives within funding panels has increased over the past 10 years . Some of the participants in the RAPPORT study described this as a journey along a continuum of learning and understanding of public involvement, and one research funder detected “a sea-change” which was “possibly to do with…everything being reviewed by a public contributor”  p50.
There is a growing body of evidence confirming both depth and breadth of public involvement activity in the composition of research proposals submitted to the NIHR for funding . It is now the norm for researchers to have dialogue with members of the public and service users when designing research and, to varying degrees, the public perspective is generally sustained once a project is funded. Lay reviewers and service users provide feedback to researchers applying to NIHR about the value of the research to the public and about how they perceive the design of the research will fare in real life health care settings. From a user perspective: is it measuring the key outcomes? Is it asking the right questions? Is it going to successfully recruit and engage potential research participants? How should the results be disseminated? This clearly has an impact on the design and conduct of funded research . A review of ten case studies collected by the NIHR Research Design Service looking at the nature and impact of public involvement shows that it contributes to research proposals submitted for funding in a number of ways. This included: initiation of the research idea; feedback on relevance of research area; key aspects of the research design such as the inclusion of qualitative work; selection of outcome measures; advice on recruitment process and sample size calculation; advice about how to maintain adherence; advice on type or timing of intervention; reviewing the lay summary; development of research materials and project website .
There is also evidence that public involvement in non-commercially funded research is increasing. A comparison of responses in 2010 and 2012 to the public involvement question in the ethics applications to the National Research Ethics Service showed an increase in public involvement in non-commercial studies whereas for commercial studies there was little change in the scale of their involvement activities .
INVOLVE has collated a number of examples demonstrating sustained and wide-ranging impact across a range of applied health funded studies . One of the studies they describe is ‘The RESPONDS Study. Bridging the knowledge and practice gap between domestic violence and child safeguarding: developing policy and training for general practice’, a research project funded by the Policy Research Programme . The researchers set up survivor groups to provide advice and help to identity priority research topics. One issue to arise from these groups was concern about the impact of domestic violence on children and this was a key driver for the RESPONDS study. Once the RESPONDS project was funded the group continued to be involved. For example, they provided their views on the content of the GP training. One of the group members developed further research skills, conducting interviews with other survivors of domestic violence and co-authoring publications. The researchers on this project have clearly tried to break down barriers and empower this group of service users with some evidence of success. However, the lead researcher candidly reflected that, “Sometimes we overloaded the meetings with us talking too much. Even though the group has strong individuals who have no problems in speaking up, they have felt overloaded with information”  p.23. In response, they tried to make the meetings more interactive and establish an on-going relationship with the group members and to ensure that they understood their role in developing applications. This study is an example in which the researchers are clearly committed to public involvement, but nevertheless the research and the style of public involvement remains firmly led by the researchers.
The term co-production has emerged to provide a conceptual framework to equalise the relationship between professionals and service users. It has been championed in the field of social care (specifically the design and delivery of services) and the Social Care Institute for Excellence has produced a comprehensive guide . Co-production has been defined in a number of ways but the one most pertinent to this paper is: “A relationship where professionals and citizens share power to plan and deliver support together, recognising that both have vital contributions to make in order to improve quality of life for people and communities”. (National Co-production Critical Friends Group cited in  p.6). The guide makes a clear distinction between co-production and participation with the former being defined by equality in the partnership between professional and service user and the latter being a form of consultation.
Likewise, the concept of ‘Experience-Based Co-Design’ has emerged in healthcare whereby staff, patients and carers work “together to identify improvement priorities, devising and implementing changes, and then jointly reflecting on their achievements”  p.11. In this model, the user voice has equal status .
The concepts of ‘co-production’ and ‘experience-based co-design’ are clearly applicable to public involvement in applied health research, specifically the relationship and balance of power between research funders/researchers on the one hand and service users/members of the public on the other. It maps onto the distinction noted earlier between consumerist and democratic approaches to involvement. The term co-production is becoming increasingly common to describe more democratic approaches to involvement whereas traditionally progressive approaches were associated with terms such as user-led, or user-controlled research, with a suggestion that research cannot be emancipatory unless it is user-led . There is a subtle difference between the two as ‘co-production’ implies some equality of relationship whereas ‘user-controlled’ clearly locates the service user as dominant. The notion that anyone is’in control’ or’leading’ runs somewhat counter to a democratic model. Arguably, however, historically the user has had so little control in research, that there is a need for a model that clearly reverses this power imbalance. Furthermore, if the scientific community wants to involve and empower the public and is committed to incorporating their experiential expertise, it is natural that as part of this process service users will want to develop their own research agenda. This is the end point of the development of Freire’s ‘conscientisation’ (see ) discussed earlier in this paper, where people become empowered to act on the conditions that shape their lives.
There are examples of user-led and user-controlled research being carried out in the UK. Many of these are from the field of mental health such as those listed in the ‘Mental Health User/Survivor Research in the UK’ policy briefing . There are organisations such as ‘Shaping Our Lives’  which is a national organisation and network of user-led groups, service users and disabled people. It is user-led, committed to inclusive involvement, and undertakes research in consultation with service and users and represents their views. There are also examples of emancipatory research particularly in the field of disability studies .
However, examples of user-led approaches to research are less easy to find among research funded by NIHR and those that do exist are mainly in the domain of social care. In an NIHR INVOLVE sponsored report based on seven case studies of user-controlled research in health and social care , five of the selected cases were closely related to social care. The amount of funding they received was often very limited (with some under £10 k) and none were funded by NIHR (three were funded by charities, two by local authorities, one by a primary care trust and one by a statutory body). NIHR-funded user-led or user-controlled research is rare. For example, the NIHR Research Design Service in the East of England has supported 672 full submissions to peer-reviewed national funders from 2008/9-2014/15. Only a handful of these have been user-led and only one was funded.
A number of challenges and gaps have been identified with user-controlled research. User controlled projects often struggle to access funding and may encounter problems of credibility and discrimination , particularly as they often adopt methods at odds with positivist research values which underlie the paradigm of traditional biomedical research. In addition, a perennial problem is the difficulty in engaging with some groups of service users and the public. Older people and those from Black and minority ethnic (BME) groups are particularly underrepresented in user-controlled social care research despite the fact that older people are the main users of social care and people from BME groups are known to have unequal access .
Lack of representation from some groups is not only an issue in user-controlled research but has been noted among all forms and types of public involvement in research . The public who volunteer to get involved in research are not representative of the general population with certain groups (e.g. youth, males, BME) being under-represented. There is also concern that the public representatives on funding panels are drawn from a small pool of people (often with a health or research background) and are not very representative of the general population . There is evidence that as they become familiar with the working practices and conduct of panels and receive training they become ‘professionalised’ and adopt a professional rather than a lay discourse . Whilst this may serve to enhance their credibility and influence on scientific committees, it inevitably involves a loss of ‘freshness’ and an increase in their alignment to the researcher view. A study of this process among people with experience of cancer who were involved with research panels noted that there were “no examples of individuals criticizing or challenging the dominant scientific model”  p.615.
Increasing diversity is a key recommendation in Going the Extra Mile . It is important to widen representativeness of members of the public who become involved so that diverse ‘world views’ have a voice. There is a need for defined selection processes, limited terms of service and to consider methodologies to widen recruitment. Novel approaches are required as not all members of the public will feel comfortable in some settings such as sitting on a funding panel. A number of recent initiatives have emerged such as ‘People are messy: a new play about patient and public involvement in research’ ( targeted at young people aged 14+. The NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East Midlands has established an East Midlands Centre for Black and Minority Ethnic Health and a Patient and Public Partners’ Council in an attempt to facilitate wider participation and involvement. Whilst such initiatives are welcome it is going to require a seismic shift to ensure that those members of the public with most power in the NIHR (e.g. those who sit on funding panels) are representative of the general population.