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

Abstract

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.

Global Equity in Clinical Trials: An ASCO Policy Statement

“…It can also lead to trial results that are disseminated—and meaningful—to the population of interest. 61 , 62 …”

“…It can also lead to trial results that are disseminated-and meaningful-to the population of interest. 61,62 Other barriers that are unique to patients with cancer in LMICs or low-resource settings are the ethical concerns of financial coercion or undue inducement. In 2018, ASCO released a policy statement addressing financial barriers to patient participation in clinical trials in the United States.…”

Examining the involvement of guardians of children with acute lymphoblastic leukemia in Tanzania as public contributors to inform the design and conduct of the GuardiansCan project: A mixed‐methods study protocol

“…Embedding public contribution in research represents one way to generate contextualized knowledge and facilitate conducting more appropriate and meaningful research in LMICs. 33 , 34 However, public contribution in research in LMICs remains in its infancy. 34 , 35 , 36 , 37 Researchers need to better understand how to implement public contribution and examine the acceptability, feasibility, and impact of public contribution in this setting.…”

“… 33 , 34 However, public contribution in research in LMICs remains in its infancy. 34 , 35 , 36 , 37 Researchers need to better understand how to implement public contribution and examine the acceptability, feasibility, and impact of public contribution in this setting.…”

Community-engaged research: a powerful tool to reduce health disparities and improve outcomes in pediatric neurosurgery

“…[14][15][16][17] Examples of previous projects include partnering with adolescents to develop a digital communication intervention to reduce adolescent obesity, the development and evaluation of preventative measures in pediatric type 2 diabetes, community-based participatory research to inform culturally specific preoperative interventions for Latino youth and their families, and community partnerships for a surgical clinical trial internationally. [18][19][20][21][22] The principles of community-engaged research are suitable to pediatric neurosurgery as well.…”