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

• Published in: Haemophilia : the official journal of the World Federation of Hemophilia Vol. 27; no. 2; pp. 261 - 269
• Main Authors: Sannié, Thomas, de Moerloose, Philippe, Albert, Brigitte, Anani, Ludovic, Arcé, Claire, Baglo, Tatiana Priscilla, Bahayde, Cheikh, Bollahi, Mohamed Abdallahi, Bouchez, Jean‐Michel, Castet, Sabine, Chami, Irene, Daviet, Bernard, Diallo, Abdou Ramane, Diallo, Maimouna, Dien, Maryse, Diop, Saliou, Dokekias, Alexis Elira, Duport, Gaetan, Duport, Jean‐François, Ehungu, Gini, Fashaho, Aloys, Feil, Mohamhed Wenne, Ferré, Norbert, Fondanesche, Christian, Giraud, Nicolas, Gruel, Yves, Gris, Jean‐Christophe, Guillou, Erwan, Haffar, Assad, Kafando, Eleonore, Kanyamunhunga, Aimable, Katendi, Guelor, Kinde, Dorothée, Kundabi, Gueth, du Laurent de la Barre, Michel, Marques‐Verdier, Alain Marques, Mekhuzla, Salomé, Michaud, Maguy, Mulindabyuma, Sylvestre, Ndahayo, James, Nébié, Yacouba, Ngoukoulou, Jean‐Paul, Pilorgé, Fabrice, Pouplard, Claire, de Poursac, Nicolas, Rakoto, Olivat Alson, Ryman, Anne, Romero‐Lux, Olivia, Sauvêtre, François, Sawadogo, Ghislaine, Schved, Jean‐François, Seromba, Emmanuel, Sow, Bouna, Sy‐Bah, Diariatou, Tardy, Brigitte, Ternisien, Catherine, Toulon, Pierre, Trossaert, Marc, Virenque, David, Weill, Alain, Zein, Ekhtel Benina, Zohoun, Alban, Zongo, Aristide, Zoungrana, Augustin
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01.03.2021; Wiley
• Subjects: Africa; association; haemophilia; Hemophilia; Hemophilia A; Humans; Life Sciences; methodology; partnership; Patients; World Federation of Hemophilia; haemophilia; association; partnership; World Federation of Hemophilia; methodology; Africa
• ISSN: 1351-8216; 1365-2516
• DOI: 10.1111/hae.14269

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.