How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH)

Abstract

Introduction: There is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and low-income countries in the field of haemophilia is planned. Aim: To draft recommendations to clarify the methodology when a partnership between low-and high-income countries is planned with the objective of a long-term implication. This methodology is to be implemented for fulfilling both medical and associative aims. Methods: Based on the available literature, a first document was written, then diffused to AFATH (Alliance Franco-Africaine pour le Traitement de l'Hémophilie) members, and after a one-day meeting and further amendments, a second draft was approved by all members before submission for publication. Results: Based on 6 years experience, several recommendations regarding the joint and separate roles of patient association and HCP for a first mission in French-speaking sub-Saharan African countries have been established. The proposed methodology for establishing preliminary contacts, the first visit and the key points for diagnostic action, medical follow-up, patient education and advocacy strategy outlines a model of partnership between patients and HCP. Conclusion: This paper written jointly by patients and physicians underlines the importance of reciprocal expert guidance and a partnership based on complementary inputs.

Bridging the gap: Survey highlights challenges and solutions in outreach and identification of people with inherited bleeding disorders

“…The survey data highlights the importance of partnerships and resource mobilisation, which is consistent with recommendations in the literature for successful patient outreach initiatives 12 . The involvement of a wide range of collaborators and funding sources, as identified in the study, is consistent with previous research that emphasises the need for multi‐sectoral approaches and collaborations to improve the identification of PWBD and access to care 15,16 . Moreover, the challenges identified in the study, such as inadequate logistical support, capacity issues, and government commitment, are also reported in the literature as barriers to effective outreach 17,18 …”

“…12 The involvement of a wide range of collaborators and funding sources, as identified in the study, is consistent with previous research that emphasises the need for multi-sectoral approaches and collaborations to improve the identification of PWBD and access to care. 15,16 Moreover, the challenges identified in the study, such as inadequate logistical support, capacity issues, and government commitment, are also reported in the literature as barriers to effective outreach. 17,18 Digital education materials, although easy to adapt, might pose difficulties for poorer communities in terms of access.…”

Diagnosis and treatment challenges in lower resource countries: State‐of‐the‐art

“…To be set up by the health authorities, this organisation requires that a suitable matrix already exists, initiated by specialised doctors and patient groups, with the support of international organisations. 10 In Africa, the question of geographical and financial accessibility to care is crucial, as direct payment can act as a significant brake, encouraging patients to continue using traditional practitioners who may not have the tools to diagnose the disease. Describing the patient journey would enable understanding the reasons for the delay of diagnosis linked to the organisation of the healthcare system to choose the solution with the most significant impact.…”

“…Bleeding disorders should be integrated into this health system model with a clear definition of the activity packages required for each level, as shown in Figure 1. To be set up by the health authorities, this organisation requires that a suitable matrix already exists, initiated by specialised doctors and patient groups, with the support of international organisations 10 . In Africa, the question of geographical and financial accessibility to care is crucial, as direct payment can act as a significant brake, encouraging patients to continue using traditional practitioners who may not have the tools to diagnose the disease.…”