This project is a collaboration between Leicester community members and the University of Leicester, University Hospitals of Leicester, Leicester Citizens (LC), and UK Research and Innovation (UKRI). A central aim of the project was to explore how these institutions and community members might best work together to identify the health priorities of different regions of Leicester. This project further developed our understanding of health and research priorities in Leicester neighbourhoods.
Soon after the project commenced, the COVID-19 pandemic commenced with major implications for how the project could be conducted, and for how its findings would be framed. There was considerable debate and discussion over how we should deliver a listening project 1) during a global pandemic, and 2) working with community researchers. The governance arrangements we finally settled on were quite risk-averse. In brief, we decided to treat the consultation as university research, with an internal review process. The consultation was delivered to the standard of qualitative research. Accordingly, important insights were gained into both the pandemic itself and into how this kind of collaborative endeavour might be designed so as to adapt to a rapidly changing set of environmental conditions.
The project centrally involved the commissioning and training of three Community Researchers (from six who were initially recruited) who had been previously involved in earlier Leicester-based community engagement projects. These researchers worked with other members of their communities to explore and identify health research priorities in Leicester neighbourhoods, particularly those characterized by multiple deprivations. In this way, the project set out to identify a range of priorities intended to inform future health research and subsequent engagement strategies for the University of Leicester and University Hospitals of Leicester.
Among the key findings of the study was the need to prioritise improving physical and mental health support. This includes reducing cultural stigma surrounding particular conditions, garnering better recognition of, and collaboration with, traditional medicines and healing practices, and improving communication regarding COVID-19 and other health priorities. Indeed, health communication emerged as a major theme in the study. Specific recommendations included that the acronym ‘BAME’ (Black, Asian and Minority Ethnic communities) should be altogether avoided, and that there should be greater specificity when addressing or referring to different groups within Leicester. This need to have a more nuanced approach to, and understanding of, the diverse communities that comprise Leicester also encompassed improving the dietary and nutritional information available in different cultural contexts, and focusing research and support on diseases that disproportionately affect these communities, such as Lupus, Diabetes, Prostate Cancer, Sickle Cell Disease (SCD) and Sickle Cells Trait (SCT).
Beyond the specific findings and recommendations relating to health, the project generated significant insights into community engagement, co-production and community-centric research more generally. Key in this respect was the development of the role and title of ‘Community Researcher’. In the course of the project, this emerged as an optimal way to grant community members equal status with the academics, clinicians, and other stakeholder practitioners involved. This also presented challenges in negotiating institutional safeguards and processes (particularly at the University of Leicester), the solutions to which also yielded important lessons.
Crucially, working with, and as, Community Researchers presented an opportunity to co-produce consultation and involvement activities and practices. Community Researchers have insights into community life that mean they are well-placed to develop and conduct these activities utilising existing networks and relationships to establish institutional presence and generate social capital. There is also potential for Community Researchers to lead and enable future gatekeeping and community participation. Most importantly, Community Researchers are able to build extraordinary levels of trust and facilitate enduring access to, and engagement with, otherwise marginalised and seldom-heard community members.
Overall, the project team has developed a series of insights into this way of working, through systematic evaluation and impact assessment of our work throughout. With the support from our funding organizations, we have been able to consolidate these insights into this repository. Here we share some specific examples and resources, and offer materials and training to colleagues and researchers who are interested in developing similar projects.
Listening themes and research
One of the central priorities of this project is to do listening work. This means performing proper co-production between the institutions involved in this project, Community Researchers, and members of the community themselves. Such an endeavour provides open spaces for social learning between institutions and communities within the city, and then allows for change to be made accordingly in terms of community needs in public health and well-being. Therefore, this project is about improving overall community health, and creating partnerships and relationships between institutions and communities. Currently, Phase 2 of this project is being carried out by community researchers, which will have more of a focus on COVID-19 than Phase 1, and institutional members conducting workshops to educate/train community researchers and others within their institutions, and to provide other resources to initiate public engagement.
The listening work undertaken by the community researchers allowed the team and Leicester communities to co-produce an understanding of research priorities. To co-produce, or have co-production, means maintaining joint collaboration and communication throughout the programme. Co-production between the groups involved in this project, the community researchers, and members of the community provided open spaces for social learning between institutions and communities. Incorporation of these into the strategy of the hospital and university will allow for real change in public health and well-being. Therefore, this project is also about improving overall community health through research, as well as creating partnerships and relationships between institutions and communities.
Our first Leicester ‘listening theme’ was a general exploration of research and health priorities in Leicester neighbourhoods. In delivering the theme, our team is also seeking to understand the effectiveness of this model as a means of engaging communities in health and in science.
The second Leicester ‘listening theme’ is being carried out by community researchers now, and expands our initial ‘topic guide’ to explore how people think their communities were affected by COVID, and why and how people feel about tissue and data research.
The objectives of this project included just how institutions, such as the university and the hospital, could better address and engage with the communities within Leicester by using their prescribed methods and utilizing such community involvement to better attune approaches and understand community health needs and concerns. Further, through utilizing the methodology, the programme aimed to identify key disadvantaged areas in Leicester in terms of health and well-being. Finally, a focus on laying and maintaining foundation for a longer-term programme of ‘meaningful and enduring engagement between the university, hospital trust and local communities in health and health-inequalities research and targeted policy development.’
As for the revised project design, the team highlighted expressions of interest, consent, data collection, and documentation. All of these involved creating forms for both participants and researchers to give consent for engagement, data collection, and to strengthen trust between researchers, institutions and participants. In addition, it allowed for documentation to highlight the key values and concerns of this project: safeguarding, priorities and themes, and relational learning through listening work, clear communication, and recognizing dynamics and roles.
This project revealed multiple outcomes, the initial one being a significant shift in thoughts on community engagement and how it works -- by transitioning once uni-institutional individuals to individuals being active in multiple institutions and communities as a result of collaboration outside of their own base. As Jason Hughes, the project’s academic lead explains, the study “highlighted how meaningful engagement necessitates a refiguring of relationships between community members, core institutional stakeholders and partner organizations.” The research and project emphasizes the necessity for communication between institutions and communities, but more specifically consistent negotiation and correspondence between an institution’s (i.e. the University of Leicester or University Hospitals of Leicester) ‘outwards’-facing’ and ‘inwards’-facing’ attempts to study and/or engage with their communities. In short, these terms refer to focusing inside or outside of their institutions for their research. Furthermore, this project emphasizes the importance of community representation, especially within such institutional studies, consequently outlining the importance of ‘citizen research,’ particularly in regards to community health and well-being. Such collaborations and relational learning enables focus on the key identified health priorities of the communities within Leicester.
Ethics, methods and principles
Ultimately, with consistent and open communication between project leaders/institutional researchers and community researchers, the community researchers redesigned the data-collection component of the project and the expression of interest, consent and documentation processes were devised as a negotiation, which notably articulated tensions between co-production and community designed data collection methods with existing strict practices of governance and, to a lesser extent, human resources processes. Due to this, the methodology of this project included co-production and participatory/engagement approaches through conducting interviews with community members, and issuing participant information sheets, demographic forms, consent forms (before interviews) and questionnaires/surveys (after interviews) by post. The community researchers used their existing neighbourhood contacts and informal networks to identify potential consultees. The identities of the participants are known to the community researchers and are kept confidential. Given that this project approaches sensitive topics regarding illnesses, the pandemic, and relationships within the community (or lack thereof), the community researchers were briefed on the need to be sensitive on these topics, and participated in role-play with the institutional researchers to overcome any judgmental responses to opinions. Participants were also asked about perspective on research participation (which also involved briefing and role-playing with researchers to regard sensitive topics). Most personal data remained anonymous to the institutional researchers.
Safeguards for this project included awareness and training for researchers, and anonymization, network authentication and pseudonymization of personal data. Ethical dilemmas such as inducing anxiety and psychological stress, and working with community researchers were considered, and were rationalized through the training and prior research experience of the community researchers, along with their key insights of the realities within Leicester neighbourhoods.
‘Safeguarding’ refers to maintaining the emotional and physical safety of participants, community researchers, and the institutional team members. This meant regarding boundaries and health protocols in terms of not only the ongoing COVID-19 pandemic, but keeping in mind potentially sensitive content to the individuals or communities involved in this project. This meant maintaining effective and open communication to eliminate misunderstanding and concern, levels of social awareness and key insights into the effects of such research on the communities in which it studies, and the anonymity of the participants. These concerns were met with resolutions of performing risk assessments, training for community researchers, and conducting open, qualitative methods that were adjusted in accordance to the needs of community researches, developing clear and open communication between all those involved in the project, and tailoring key research areas to the concerns of community members of Leicester, i.e. the main health and well-being priorities outlined by the community members that need more knowledge and attention built toward meeting the needs of Leicester’s citizens. In addition, by consistently re-evaluating the ethics of this project, it highlighted the importance of communication, inclusion, and addressing and making changes if needed.
Marie Nugent and Rebecca Pritchard will be administering workshops for community researchers, to new and/or experienced researchers, in early 2022 at the University of Leicester. During these workshops, Nugent and Pritchard will discuss the process of gathering such an extensive research project, the specific roles and functions within such a project -- particularly that of community researchers, institutions and communities -- and the partnerships that are necessary in this process, then how strong research is built from such partnerships, how ethical codes are established and how imperative and binding they are for researchers and institutions, and how each step of such a project, each role, and each piece of data affects communities, especially in regards to community health and well-being. Further, research steps and guidance, and funding for community researchers will be discussed.
The details for the workshops will be available soon.
Along with this website and the workshops, this project has a FigShare, which contains a collection of documents from the project, along with helpful and interesting academic articles.
The FigShare collection will be available to view soon.