The role of community engagement and involvement in Parkinson’s disease research: a case study from Africa

Fothergill-Misbah, Natasha, Thomas, O., Mwithiga, H. and Walker, R. (2021) The role of community engagement and involvement in Parkinson’s disease research: a case study from Africa. Movement Disorders Clinical Practice, 36 (Supplement 1).

Abstract

Objective: using a case study from Africa to understand the potential role of community engagement and involvement (CEI) in future research on Parkinson’s disease (PD).

Background: the value of CEI in research is becoming increasingly recognised across academic, government and pharmaceutical sectors [1]. CEI builds ongoing, meaningful and collaborative relationships between the community and organisations where research is carried out ‘with’ or ‘by’ members of the public and communities, not ‘to’ or ‘for’ them. CEI ensures what matters to patients, and their families, is researched and can improve the validity and robustness of studies.

Method: sixteen people with PD, family members, health workers and support group leaders from Nigeria, Ghana, Kenya, Ethiopia and Uganda came together during a CEI meeting to inform a research grant proposal. The meeting was held via Zoom and lasted over two hours. The role of CEI was to improve the equality, efficacy and impact of responses and services through ensuring the community were active stakeholders in the deliberations, design, decision-making, implementation and dissemination of the project.

Results: the meeting allowed participants to discuss their personal challenges with PD, providing a perspective that underscored the importance of giving communities a voice. Common issues across Africa included: poor medication availability, accessibility and affordability; lack of specialist health workers; improper diagnostic methods; lack of PD awareness/educational materials; stigma; lack of support groups; poor awareness of alternative/non-pharmacological therapies; challenges around the end of life; and gender concerns.

Conclusion: PD is a complex condition with a wide heterogeneity of disease that is experienced differently depending on sociocultural, political and economic contexts. When exploring PD where previous research is scant, it is important to ensure proposals meet the needs/challenges of the groups they are intended to impact; CEI work should continue throughout the project’s lifecycle. The Covid-19 pandemic has accelerated uptake of technology globally and this meeting demonstrated the possibilities for technology to ensure patients can be involved in research. This CEI session, the first of its kind for PD in Africa, showed how virtual platforms can connect people globally, while demonstrating the willingness of patients to be involved in research.

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Contributors

Author: Natasha Fothergill-Misbah

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