'All hands-on deck', working together to develop UK standards for public involvement in research.

BACKGROUND: Public involvement in research is an established part of the research process in the UK, however there remain questions about what good public involvement in research looks and feels like. Until now public involvement practitioners, researchers and members of the public have looked for answers in examples shared across networks, published case studies, guidance and research articles. Pulling these strands together, the UK Standards for Public Involvement provides six statements (standards) about public involvement in research. They were produced by a partnership of organisations from Scotland, Northern Ireland, Wales and England with contributions from involvement practitioners, public partners, researchers and research funders. MAIN BODY: Each standard has reflective questions, which are designed to encourage standard users to use approaches and behaviours that improve involvement, over time. The standards are designed to be used as a practical tool, and reflect the agreed hallmarks of good public involvement in research for example, flexibility in approaches used, shared learning, and mutual respect.The standards development process is described from the initial idea and scoping, via the appraisal of existing standard sets and integration of values and principles in public involvement in research. The collaborative writing process of and consultation on the draft standard set is described, together with what changed as a result of feedback. The initiation of a year-long testing programme with forty participating research organisations, the experiential feedback and the resulting changes to the standards is summarised. CONCLUSION: This commentary paper describes, in some detail, a process to develop a set of six standards for public involvement in research in the UK. Producing a complex, national public involvement initiative is not without its challenges, and in supplementary material partnership members reflect on and share their experiences of standards development. The next phase of integration and implementation is explored with concluding comments from those that tested and helped improve the standards.

Co-producing public involvement training with members of the public and research organisations in the East Midlands: creating, delivering and evaluating the lay assessor training programme.

PLAIN ENGLISH SUMMARY: Members of the public share their views with researchers to improve health and social care research. Lay assessing is one way of doing this. This is where people, drawing upon personal and general life experience, comment on material, such as grant applications and patient information, to highlight strengths and weaknesses and to suggest improvements. This paper reports on setting up a training programme for lay assessors. Meetings were held between interested public and staff from research organisations. People discussed what lay assessing is, why they want to do it, skills and support needed and if training was wanted. They were invited to form a group to develop the training together. Training was delivered in the East Midlands. People who attended gave their thoughts about it by completing questionnaires and joining a feedback event. The group developed the structure of the training programme together and it oversaw the development of the training content by individual members. People who attended training reported feeling more confident about lay assessing. This was particularly so for those who had not done lay assessing before. They indicated how valuable it was to talk with others at the training. Our findings support the National Institute for Health Research recommendations for improving learning and development for public involvement in research. This project has created a solid base for local research organisations to work together in public involvement training. Lay assessor training is now part of a wider programme of shared resources called the Sharebank. ABSTRACT: Background Involving members of the public in research can improve its quality and incorporate the needs and views of patients. One method for doing this is lay assessing, where members of the public are consulted to improve research materials. This paper documents the establishment of a pilot training programme for lay assessors. It describes a way of working that embodies a regional, cross-organisational approach to co-producing training with members of the public. Methods Open meetings, led by AH, were held for existing and aspiring lay assessors to define lay assessing, motivations for doing it, skills required, associated learning and development needs, and to gauge interest for training. Those who attended meetings, including members of the public and staff, were invited to form a working group to co-produce the training programme. Training was delivered in modules at two centres in the East Midlands and evaluated through participant feedback at the end of each module and at an evaluation event. Feedback was through a mix of Likert scale scoring, open text and verbal responses. Results Discussions from the open meetings informed the development of the training by the working group. Led by AH, the working group, as a whole, co-produced the structure and format of the training and oversaw training content development by individuals within the group. Training was well-received by participants. Feedback through Likert scoring (n = 14) indicated higher feelings of confidence in knowledge of relevant subject matter and in fulfilling the lay assessor role, particularly amongst those who had not done lay assessing before. Opportunities that the training afforded for interaction between participants - sharing of varied experiences and knowledge - and a 'learn by doing' approach was of particular value, as indicated by 10 responses to open-ended questions. Conclusions This project has created a solid foundation for collaboration between research organisations in the East Midlands in devising and delivering training in public involvement together. Our evaluation provides evidence in support of National Institute for Health Research (NIHR) recommendations on principles for learning and development for public involvement in research.

Barriers and Facilitators to Healthy Lifestyle Changes in Minority Ethnic Populations in the UK: a Narrative Review.

Minority ethnic populations experience a disproportionate burden of health inequalities compared with the rest of the population, including an increased risk of type 2 diabetes (T2DM). The purpose of this narrative review was to explore knowledge and attitudes around diabetes, physical activity and diet and identify barriers and facilitators to healthy lifestyle changes in minority ethnic populations in the UK. The narrative review focused on three key research topics in relation to barriers and facilitators to healthy lifestyle changes in minority adult ethnic populations: (i) knowledge and attitudes about diabetes risk; (ii) current behaviours and knowledge about physical activity and diet; and (iii) barriers and facilitators to living a healthier lifestyle. Nearly all of the studies that we identified reported on South Asian minority ethnic populations; we found very few studies on other minority ethnic populations. Among South Asian communities, there was generally a good understanding of diabetes and its associated risk factors. However, knowledge about the levels of physical activity required to gain health benefits was relatively poor and eating patterns varied. Barriers to healthy lifestyle changes identified included language barriers, prioritising work over physical activity to provide for the family, cultural barriers with regard to serving and eating traditional food, different perceptions of a healthy body weight and fear of racial harassment or abuse when exercising. Additional barriers for South Asian women included expectations to remain in the home, fear for personal safety, lack of same gender venues and concerns over the acceptability of wearing 'western' exercise clothing. Facilitators included concern that weight gain might compromise family/carer responsibilities, desire to be healthy, T2DM diagnosis and exercise classes held in 'safe' environments such as places of worship. Our findings suggest that South Asian communities are less likely to engage in physical activity than White populations and highlight the need for health promotion strategies to engage people in these communities. There is a gap in knowledge with regard to diabetes, physical activity, diet and barriers to healthy lifestyle changes among other ethnic minority populations in the UK; we recommend further research in this area.

Partners in projects: preparing for public involvement in health and social care research.

In recent years, several UK and, international funders of health and social care related research have adopted the policy of requiring explicit evidence of the 'public' voice in all aspects of project design. For many academic researchers engaged within research, evaluations or audit projects, this formal requirement to actively engage members of the public will present them with both benefits and challenges to securing knowledgeable, skilled, and confident lay representation onto project teams. This could potentially lead to the exploitation of those individuals who are available, appropriately informed, and adequately prepared for such activities. Currently, much of the preparation of patients or members of the public for research involvement tends to be aligned to specific projects; however, with the call for greater active and meaningful involvement of lay representatives in future national and international funding applications, there is clearly a growing need to 'train' sufficient numbers of confident and competent representatives to meet this growing demand. This paper describes the development of a specifically designed research awareness training programme and underpinning theoretical model, which has been specifically designed to support active and meaningful lay involvement in research, evaluations and audit projects. Developed over a four year period, the course is a culmination of learning extracted from a series of four completed research projects, which have incorporated an element of public and patient involvement (PPI) training in their overall design.

The impact of patient participation direct enhanced service on patient reference groups in primary care: a qualitative study.

BACKGROUND: NHS policy documents continue to make a wide-ranging commitment to patient involvement. The Patient Participation Direct Enhanced Service (PP-DES), launched in 2011, aimed to ensure patients are involved in decisions about the range and quality of services provided and commissioned by their practice through patient reference groups (PRGs). The aim of this exploratory study is to review the impact of the PP-DES (2011-13) on a sample of PRGs and assess how far it has facilitated their involvement in decisions about the services of their general practices. METHODS: A qualitative methods design, using semi- structured interviews and focus groups, was employed to explore the experiences and views of GP practice staff (n = 24), PRG members (n = 80) at 12 GP practices, and other stakeholders (n = 4). RESULTS: Wide variation in the role and remit of the participating PRGs was found, which broadly ranged from activities to improve practice resources to supporting health promotion activities. The majority of PRG members were unfamiliar with the PP-DES scheme and its aims and purpose. Stakeholders and practice staff felt strongly that the main success of the PP-DES was that it had led to an increase in the number of PRGs being established in the locality. CONCLUSION: The PP-DES scheme has been a catalyst to establish PRGs. However, the picture was mixed in terms of the PRGs involvement in decisions about the services provided at their general practice as there was wide variation in the PRGs role and remit. The financial incentive alone, provided via the DES scheme, did not secure greater depth of PRG activity and power, however, as social factors were identified as playing an important role in PRGs' level of participation in decision making. Many PRGs have to become more firmly established before they are involved as partners in commissioning decisions at their practice.