Series: Public engagement with research. Part 3: Sharing power and building trust through partnering with communities in primary care research.

BACKGROUND: This article focuses on potential strategies to support primary care researchers in working in partnership with the public and healthcare professionals. Partnership working can potentially to improve the relevance and usefulness of research and ensure better research and health outcomes. DISCUSSION: We describe what we mean by partnership working and the importance of reflecting on power and building trusting relationships. To share power in partnership working, it is essential to critically reflect on the multiple dimensions of power, their manifestations, and your own power. Power can influence relationships and therefore, it is essential to build trust with partners. Next, we outline how the context of primary care research and decisions about who you work with and how to work together, are vital considerations that are imbued with power. Lastly, we suggest different ways of working in partnership to address different dimensions of power. We provide examples from primary care research across Europe regarding how to recognise, tackle, and challenge, invisible, hidden and visible power. CONCLUSION: We conclude by proposing three calls to actions to encourage researchers working in primary care to consider the multiple dimensions of power and move towards partnership working. First is to use participatory methods to improve the inclusivity of your research. Second is to include patients and the public in decisions about the design, delivery and development of research and its outcomes. Third is to address various systemic and institutional barriers which hinder partnership working.

Partnership approaches to primary care research can potentially improve the relevance, usefulness and inclusivity of research.Working in partnership involves researchers and the public sharing power in important research decisions and building trusting relationships.Recognising and addressing power differentials and building trusting relationships requires time and effort.

Patient involvement in clinical trials.

Clinical trials are required to ensure new treatments are safe and effective for patients. The involvement of participants in the planning and execution of clinical trials is critical not only to their success but also so that the participating communities can benefit from them.

Co-production: a kind revolution.

Carnegie UK (CUK) and National Institute for Health Research (NIHR) INVOLVE held a meeting on the co-production of research, how we work together on equal terms. We brought together public contributors and individuals from organisations focused on research. We wanted to discuss how co-production could work in research, how it could be seen as business as usual, and to think through the barriers that stop us from working together, as well as the things that can help us move forward. While we agreed that the idea of working together is important, we recognised there are still many challenges to co-production being seen as a normal activity in research and the development of a 'business case' to persuade others is still needed. We also considered the wider civic roles that Universities are adopting as important in helping co-production become normal practice. Discussion focused on issues such as power and how it works in research. We recognised that we also need to create the right conditions for co-production, changing research culture so it becomes kinder, with a focus on the development of relationships. We also recognised the need for enough time for honest, high quality conversations between patients, public contributors and researchers that take account of how power works in research. Co-production was seen as a societal 'good,' helping us live well by undertaking research together that benefits the health of the public. We also identified a range of ways we could move co-production forward, recognising we are on a journey and that current societal changes brought about by Covid-19 may result in us being more radical in how we rethink the ways we want to work in research.

Carnegie UK (CUK) and National Institute for Health Research (NIHR) INVOLVE held a meeting on the co-production of research, how we work together on equal terms. We brought together public contributors and individuals from organisations focused on research. We wanted to discuss how co-production could work in research, how it could be seen as business as usual, and to think through the barriers that stop us from working together, as well as the things that can help us move forward. While we agreed that the idea of working together is important, we recognised there are still many challenges to co-production being seen as a normal activity in research and the development of a 'business case' to persuade others is still needed. We also considered the wider civic roles that Universities are adopting as important in helping co-production become normal practice. Discussion focused on issues such as power and how it works in research. We recognised that we also need to create the right conditions for co-production, changing research culture so it becomes kinder, with a focus on the development of relationships. We also recognised the need for enough time for honest, high quality conversations between patients, public contributors and researchers that take account of how power works in research. Co-production was seen as a societal 'good,' helping us live well by undertaking research together that benefits the health of the public. We also identified a range of ways we could move co-production forward, recognising we are on a journey and that current societal changes brought about by Covid-19 may result in us being more radical in how we rethink the ways we want to work in research.

What Does "Good" Community and Public Engagement Look Like? Developing Relationships With Community Members in Global Health Research.

Community and public engagement (CPE) is increasingly becoming a key component in global health research. The National Institute for Health Research (NIHR) is one of the leading funders in the UK of global health research and requires a robust CPE element in the research it funds, along with CPE monitoring and evaluation. But what does "good" CPE look like? And what factors facilitate or inhibit good CPE? Addressing these questions would help ensure clarity of expectations of award holders, and inform effective monitoring frameworks and the development of guidance. The work reported upon here builds on existing guidance and is a first step in trying to identify the key components of what "good" CPE looks like, which can be used for all approaches to global health research and in a range of different settings and contexts. This article draws on data collected as part of an evaluation of CPE by 53 NIHR-funded award holders to provide insights on CPE practice in global health research. This data was then debated, developed and refined by a group of researchers, CPE specialists and public contributors to explore what "good" CPE looks like, and the barriers and facilitators to good CPE. A key finding was the importance, for some research, of investing in and developing long term relationships with communities, perhaps beyond the life cycle of a project; this was regarded as crucial to the development of trust, addressing power differentials and ensuring the legacy of the research was of benefit to the community.

Dementia informal caregiver obtaining and engaging in food-related information and support services.

As dementia progresses, caregivers increasingly have to manage the decline of food-related abilities with little outside information or input from support services The provision of food coping skills and knowledge can lessen the burden on caregivers. However, there is little research on caregivers' perspectives on food-related services. This paper reports on a qualitative study to investigate informal caregivers' experiences of, and views on, food-related information and support services in dementia. Twenty informal caregivers were interviewed and the transcripts from these interviews were analysed using both deductive and inductive thematic analysis. Four categories emerged. 'Direct food-related Information', covers written material, training, 'Direct food-related informal support': lunch clubs, 'Indirect non-food related formal support services' covers respite services and domestic help at home. Finally 'no services required' covers those who did not feel they needed any form of intervention due to confidence in managing food-related processes or having no change in dementia progression and food responsibility. Most caregivers will need different levels of information and support at different stages of dementia. It is necessary therefore to undertake ongoing individual assessment of food information and support needs.

Reaching a consensus on service-user involvement in courses for professionals.

AIM: To describe how a workshop that used a modified nominal group technique (NGT) was used at the end of a research project to develop a standard of education and training requiring UK education providers to include service users in the design and delivery of education and training. BACKGROUND: Often the objective of a research project is to deliver a decision where there is insufficient objective evidence. In this particular instance a decision was sought on whether service users should be involved in the design and delivery of education and training for healthcare professionals and what this involvement might look like. One solution can be to use a formal approach to decision making. NGT is one of several approaches to decision making that seeks to achieve consensus among participants. DATA SOURCES: A modified NGT workshop was used and included students, service users and academic staff. DISCUSSION: This paper describes the workshop, its outcomes and points to consider when using such an approach. CONCLUSION: This paper outlines a modified NGT that was used in a workshop to complement other research techniques and provides practical tips on how to maximise the chances of the success of the approach. Modifications were necessary to address the particular challenges posed in this research. IMPLICATIONS FOR RESEARCH/PRACTICE: The modified NGT approach outlined in this paper could be used by nurses when addressing questions and issues related to service-user involvement in planning the design and delivery of education and training.

Planning a pathway in nursing: do course experiences influence job plans?

Little is known about the factors that influence career decisions within nursing. This study contributes to a limited body of knowledge about the affect of course experiences on job plans. The findings presented are from the first phase of a longitudinal questionnaire survey investigating nurses' careers. One thousand five hundred and ninety six adult branch nurses (87% response rate) from 37 universities returned a questionnaire at qualification which included questions about specialties experienced during the course, whether course experiences encouraged or discouraged them from working in the specialty, specialty(ies) of first job, and specialty(ies) planned for three years after qualification. Overall, course experiences were more likely to encourage than discourage diplomates from wanting to work in a particular specialty, although for three specialties (elderly care, outpatients and theatres) a significantly greater proportion felt discouraged than encouraged. Uniformity in the findings across the universities suggests that certain specialties may have intrinsic features that encourage or discourage many nurses from working in them, irrespective of the experience they gain. A stronger association existed between course influences and plans for three years after qualification, than between course experiences and first job. Findings are discussed in the context of other research in the area and their implications for recruitment.

Using questionnaires to ask nurses about working in the community: problems of definition.

Given the emphasis on providing services in the community, it is likely that there will be an increase in research into various aspects of the community. It is important that the way in which 'community' is defined in research will provide valid and reliable data and facilitate comparisons with other work on the subject. This paper discusses how the problems of defining the community were approached in a longitudinal study of the careers of people qualifying from the pre-registration diploma course in nursing.

A multi-stage approach to the coding of data from open-ended questions.

One of the criticisms of qualitative research is that the processes and procedures of data analysis tire often not made explicit ( 1 ). This criticism is particularly pertinent to the analysis of open-ended questions. This paper outlines an approach to analysing open-ended questions using content analysis, making explicit the processes and procedures involved. The paper will also describe how the challenge of ensuring rigour and maintaining the diversity and subtlety of responses, which can easily be lost when attempting to quantify qualitative data, can be overcome.