Challenges and solutions: surveying researchers on what type of community engagement and involvement activities are feasible in low and middle income countries during the COVID-19 pandemic.

OBJECTIVES: Measures to limit the spread of infection during the COVID-19 global pandemic have made engaging and involving members of the community in global health research more challenging. This research aimed to explore how global health researchers adapted to the imposed pandemic measures in low and middle income countries (LMICs) and how they overcame challenges to effective community engagement and involvement (CEI). DESIGN: A qualitative two-stage mixed-methods study involving an online survey and a virtual round table. SETTING: The survey and round table were completed online. PARTICIPANTS: Of 53 participants, 43 were LMIC-based or UK-based global health researchers and/or CEI professionals, and 10 worked for the National Institute for Health Research or UK Government's Department of Health and Social Care. OUTCOME MEASURES: This study aimed to capture data on: the number of CEI activities halted and adapted because of the COVID-19 pandemic; where CEI is possible; how it has been adapted; what the challenges and successes were; and the potential impact of adapted or halted CEI on global health research. RESULTS: Pandemic control measures forced the majority of researchers to stop or amend their planned CEI activities. Most face-to-face CEI activities were replaced with remote methods, such as online communication. Virtual engagement enabled researchers to maintain already established relationships with community members, but was less effective when developing new relationships or addressing challenges around the inclusion of marginalised community groups. CONCLUSIONS: COVID-19 has highlighted the need for contingency planning and flexibility in CEI. The redesigning and adopting of remote methods has come with both advantages and disadvantages, and required new skills, access to technology, funding, reliable services and enthusiasm from stakeholders. The methods suggested have the potential to augment or substitute previously preferred CEI activities. The effectiveness and impact of these remote CEI activities need to be assessed.

Community engagement and involvement in Ghana: conversations with community stakeholders to inform surgical research.

BACKGROUND: Involving patients and communities with health research in low- and middle-income countries (LMICs) contributes to increasing the likelihood that research is relevant in local context and caters to the needs of the population, including vulnerable and marginalised groups. When done right, it can also support empowerment of wider communities in taking ownership of their own health, lead to increased access and uptake of health services and generally improve the wellbeing of individuals. However, the evidence base of how to undertake successful community engagement and involvement (CEI) activities in LMICs is sparse. This paper aims to add to the available literature and describes how the Global Health Research Unit on Global Surgery's (GSU) team in Ghana worked collaboratively with the Unit's team in the UK and a UK-based Public Advisory Group to involve community stakeholders in rural Ghana with surgical research. The aim was to explore ways of reaching out to patients and community leaders in rural Ghana to have conversations that inform the relevance, acceptability, and feasibility of a clinical trial, called TIGER. METHODS: As this kind of larger scale involvement of community stakeholders with research was a novel way of working for the team in Ghana, a reflective approach was taken to outline step-by-step how the GSU team planned and undertook these involvement activities with 31 hernia patients, two Chiefs (community leaders), a community finance officer and a local politician in various locations in Ghana. The barriers that were experienced and the benefits of involving community stakeholders are highlighted with the aim to add to the evidence base of CEI in LMICs. RESULTS: GSU members from the UK and Ghana planned and organised successful involvement activities that focused on establishing the best way to talk to patients and other community stakeholders about their experiences of living with hernias and undergoing hernia repairs, and their perceptions of the impact of hernias on the wider community. The Ghanaian team suggested 1:1 conversations in easily accessible locations for rural patient contributors, creating a welcoming environment and addressing contributors in their local dialects. A UK-based Public Advisory Group helped in the initial stages of planning these conversations by highlighting potential barriers when approaching rural communities and advising on how to phrase questions around personal experiences. Conversations mainly focused on understanding the needs of hernia patients in rural Ghana to then incorporate these in the design of the TIGER trial to ensure its relevance, acceptability and feasibility. When talking to patient contributors, the GSU teams found that they were more likely to open up when they knew members of the team and the opportunity to speak to local leaders only arose because of the Ghanaian team members being well-respected amongst communities. The experiences of the patient and community contributors led to changes in the study protocol, such as including women in the patient cohort for the trial, and allowed the GSU teams to confirm the relevance and acceptability of this trial. These conversations also taught the team a lot about perceptions of health in rural communities, allowed the Ghanaian team to establish relationships with community leaders that can be utilised when future studies need input from the public, and has changed the minds of the Ghanaian research team about the importance of involving patients with research. CONCLUSION: This paper contributes to the evidence base on successful CEI activities in LMICs by providing an example of how CEI can be planned and organised, and the benefits this provides. The conversations the teams had with patient contributors in Ghana are an example of successful patient consultations. Even though there are certain limitations to the extent of these involvement activities, a solid foundation has been built for researchers and community stakeholders to establish relationships for ongoing involvement.

Evidence in the literature shows that research that was designed and implemented with the help of patients or other members of the community affected by the study, is more likely to be relevant to the needs of the end user. This can have positive effects on the quality and impact of the study. However, working collaboratively with patient or public contributors can have certain challenges, especially in low- and middle- income countries. For example, factors such as different languages or dialects, religious beliefs, health beliefs, level of literacy, understanding of research, and poverty can potentially make it more difficult for researchers to reach, communicate and involve relevant members of the public. On top of this, the evidence base for successfully implementing these so-called community engagement and involvement activities is sparse, making it more challenging for researchers to learn from others' experiences.Members of the Global Surgery Unit, who are based in Ghana, proposed a clinical trial to address the shortfall of specialist surgeons at rural hospitals. This will be achieved by training medically qualified doctors, who have not yet gone through the specialist training to become qualified surgeons, to perform inguinal hernia repairs proficiently. Before the study gets funded and a protocol can be designed, the researchers need to ensure its relevance, acceptability, and feasibility. This is usually done by getting the opinion and thoughts of key stakeholders, mainly individuals who will be affected by the research. To achieve this, the team in Ghana worked together with Global Surgery Unit members in the UK to identify the best ways to approach and have conversations with 31 inguinal hernia patients who either previously had surgery or currently live with hernias, two Chiefs (community leaders), a community finance officer and a local politician in a variety of locations in Ghana that are representative of the patient cohort for the study. The intention was to understand the impact of hernias on individual patients, their families, and entire communities to inform the relevance, acceptability and feasibility of the clinical trial, and ensure that relevant aspects are captured in the study protocol. A UK-based public advisory group provided initial input to help eliminate potential barriers of addressing patient contributors in rural Ghana.This paper states in detail how these conversations were planned and organised, the challenges the team had to overcome, and what they learned and gained from talking to community members - which goes far beyond just informing a study.