Patient-public engagement strategies for health system improvement in sub-Saharan Africa: a systematic scoping review

Abstract

Background Actively involving patients and communities in health decisions can improve both peoples’ health and the health system. One key strategy is Patient-Public Engagement (PPE). This scoping review aims to identify and describe PPE research in Sub-Saharan Africa; systematically map research to theories of PPE; and identify knowledge gaps to inform future research and PPE development. Methods The review followed guidelines for conducting and reporting scoping reviews. A systematic search of peer-reviewed English language literature published between January 1999 and December 2019 was conducted on Scopus, Medline (Ovid), CINAHL and Embase databases. Independent full text screening by three reviewers followed title and abstract screening. Using a thematic framework synthesis, eligible studies were mapped onto an engagement continuum and health system level matrix to assess the current focus of PPE in Sub-Saharan Africa. Results Initially 1948 articles were identified, but 18 from 10 Sub-Saharan African countries were eligible for the final synthesis. Five PPE strategies implemented were: 1) traditional leadership support, 2) community advisory boards, 3) community education and sensitisation, 4) community health volunteers/workers, and 5) embedding PPE within existing community structures. PPE initiatives were located at either the ‘involvement’ or ‘consultation’ stages of the engagement continuum, rather than higher-level engagement. Most PPE studies were at the ‘service design’ level of the health system or were focused on engagement in health research. No identified studies reported investigating PPE at the ‘individual treatment’ or ‘macro policy/strategic’ level. Conclusion This review has successfully identified and evaluated key PPE strategies and their focus on improving health systems in Sub-Saharan Africa. PPE in Sub-Saharan Africa was characterised by tokenism rather than participation. PPE implementation activities are currently concentrated at the ‘service design’ or health research levels. Investigation of PPE at all the health system levels is required, including prioritising patient/community preferences for health system improvement.

Point‐of‐care testing allows successful simultaneous screening of sickle cell disease, HIV, and tuberculosis for households in rural Guinea‐Bissau, West Africa

“…The rural community's acceptance of the screening project was satisfactory, with 100% households' participation, highlighting the importance of preliminary health information and community engagement in screening programs. 17 Water and sanitation conditions in the Fanhe area were poor, as well as electricity support, similarly to other parts of the country. 18 Moreover, rate of illiteracy was high, with low basic health knowledge and a high proportion of adults who spoke only local languages.…”

“…Dedicated staff training was possible in a short period of time and a brief supervision of 15 days allowed correct interpretation of POC test results in all cases but two, indicating that with long‐distance supervision, results could even be improved. The rural community's acceptance of the screening project was satisfactory, with 100% households’ participation, highlighting the importance of preliminary health information and community engagement in screening programs 17 …”

Community engagement in research in sub-Saharan Africa: approaches, barriers, facilitators, ethical considerations and the role of gender – a systematic review protocol

“… 22 A more recent review describing patient–public engagement (PPE) strategies for strengthening health systems in SSA found that tokenism rather than actual participation is the main characteristic of PPE in SSA. 23 Their research focused on PPE and its ability to strengthen health systems. Our review goes beyond PPE to evaluate diverse CE in community-based participatory research out of clinical settings.…”

Community Participation in Primary Healthcare in the South Sudan Boma Health Initiative: A Document Analysis

“…This finding aligns with several recent systematic reviews on community participation. 4,14,[30][31][32] A 2015 research synthesis reported that 95% of initiatives they reviewed engaged communities in implementing interventions, and only 18% involved them in identifying and defining problems. 4 A 2020 systematic review on community participation in humanitarian settings reported limited evidence on involvement of communities in framing issues or designing solutions.…”

“…None of the studies reported shared leadership and concluded that the patient public strategies are characterized by tokenism rather than participation. 30 Another systematic review found that communities did not identify health problem research at the problem definition stage but rather learned about a health problem pre-determined by researchers, which is the same case for the BHI. 32 Designers focused the issue on access to primary healthcare services.…”