How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH)
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‐ a...
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Published in | Haemophilia : the official journal of the World Federation of Hemophilia Vol. 27; no. 2; pp. 261 - 269 |
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Main Authors | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Format | Journal Article |
Language | English |
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England
Wiley Subscription Services, Inc
01.03.2021
Wiley |
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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. |
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AbstractList | IntroductionThere 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.AimTo 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.MethodsBased 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.ResultsBased 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.ConclusionThis paper written jointly by patients and physicians underlines the importance of reciprocal expert guidance and a partnership based on complementary inputs. 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. 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. 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. 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. This paper written jointly by patients and physicians underlines the importance of reciprocal expert guidance and a partnership based on complementary inputs. 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. 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. 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. |
Author | Sauvêtre, François Kafando, Eleonore Baglo, Tatiana Priscilla Rakoto, Olivat Alson Mulindabyuma, Sylvestre Toulon, Pierre Tardy, Brigitte Gris, Jean‐Christophe Diallo, Maimouna Kundabi, Gueth Bollahi, Mohamed Abdallahi Sawadogo, Ghislaine Nébié, Yacouba Guillou, Erwan Diop, Saliou Sow, Bouna Sannié, Thomas Mekhuzla, Salomé Fondanesche, Christian Duport, Gaetan Haffar, Assad Gruel, Yves Dokekias, Alexis Elira Ehungu, Gini Trossaert, Marc Bahayde, Cheikh Bouchez, Jean‐Michel Ngoukoulou, Jean‐Paul Pilorgé, Fabrice Feil, Mohamhed Wenne Schved, Jean‐François Dien, Maryse Fashaho, Aloys Weill, Alain Chami, Irene Zohoun, Alban Kinde, Dorothée de Poursac, Nicolas du Laurent de la Barre, Michel Giraud, Nicolas Castet, Sabine Zein, Ekhtel Benina Zongo, Aristide Albert, Brigitte Ferré, Norbert Pouplard, Claire Romero‐Lux, Olivia Ryman, Anne Marques‐Verdier, Alain Marques Arcé, Claire Diallo, Abdou Ramane Ndahayo, James Michaud, Maguy Ternisien, Catherine Virenque, David Katendi, Guelor Daviet, Bernard Kanyamunhunga, Aimable Anani, Ludovic Duport, Jean‐Fr |
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Cites_doi | 10.1046/j.1351-8216.2003.00831.x 10.1111/hae.13682 10.1111/j.1365-2516.2012.02875.x 10.1182/bloodadvances.2019GS121537 10.1055/s-2005-922228 10.1111/hae.13818 10.1186/s13023-019-1005-9 10.1111/hae.14046 10.1182/bloodadvances.2018GS112562 10.1007/s12288-015-0562-x 10.1111/hae.13409 10.1177/2040620718784830 10.1111/hae.13230 10.1097/ACM.0000000000000603 10.1111/hae.14040 10.7326/M19-1208 10.1111/hae.13833 |
ContentType | Journal Article |
Contributor | Sauvêtre, François Schved, Jean-François Kafando, Eleonore Baglo, Tatiana Priscilla Rakoto, Olivat Alson Mulindabyuma, Sylvestre Toulon, Pierre Marques-Verdier, Alain Marques Tardy, Brigitte Diallo, Maimouna Romero-Lux, Olivia Kundabi, Gueth Bollahi, Mohamed Abdallahi Sawadogo, Ghislaine Nébié, Yacouba Guillou, Erwan Diop, Saliou Sow, Bouna Gris, Jean-Christophe Mekhuzla, Salomé Fondanesche, Christian Duport, Gaetan Haffar, Assad Gruel, Yves Dokekias, Alexis Elira Ehungu, Gini Trossaert, Marc Bouchez, Jean-Michel Bahayde, Cheikh Pilorgé, Fabrice Feil, Mohamhed Wenne Sy-Bah, Diariatou Dien, Maryse Fashaho, Aloys Weill, Alain Chami, Irene Zohoun, Alban Kinde, Dorothée de Poursac, Nicolas du Laurent de la Barre, Michel Giraud, Nicolas Castet, Sabine Zein, Ekhtel Benina Zongo, Aristide Albert, Brigitte Ferré, Norbert Pouplard, Claire Ryman, Anne Arcé, Claire Diallo, Abdou Ramane Ndahayo, James Michaud, Maguy Ternisien, Catherine Virenque, David Katendi, Guelor Daviet, Bernard Ngoukoulou, Jean-Paul Kanyamunhunga, Aimable Anani, Ludovic Duport, Jean |
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Keywords | haemophilia association partnership World Federation of Hemophilia methodology Africa |
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References_xml | – volume: 10 start-page: 14 issue: suppl 4 year: 2004 end-page: 19 article-title: Haemophilia in the developing world: successes, frustrations and opportunities publication-title: Haemophilia – volume: 26 start-page: 840 year: 2020 end-page: 846 article-title: Unravelling the knowledge, beliefs and behaviours of persons with haemophilia and their families in Senegal publication-title: Haemophilia – volume: 23 start-page: 682 year: 2017 end-page: 688 article-title: São Paulo‐Toronto Hemophilia Study Group. Comparing the burden of illness of haemophilia between resource‐constrained and unconstrained countries: the São Paulo‐Toronto Hemophilia Study publication-title: Haemophilia – volume: 32 start-page: 347 year: 2016 end-page: 355 article-title: Management of Haemophilia in Developing Countries: Challenges and Options publication-title: Indian J Hematol Blood Transfus – volume: 24 start-page: 229 year: 2018 end-page: 235 article-title: First‐year results of an expanded humanitarian aid programme for haemophilia in resource‐constrained countries publication-title: Haemophilia – volume: 18 start-page: 94 issue: Suppl 4 year: 2012 end-page: 100 article-title: Differences between developed and developing countries in paediatric care in haemophilia publication-title: Haemophilia – volume: 26 start-page: 1 issue: suppl 6 year: 2020 end-page: 158 article-title: WFH Guidelines for the Management of Hemophilia publication-title: Haemophilia – volume: 27 start-page: e190 issue: 3 year: 2019 end-page: e199 article-title: HAEMOcare: The First International Epidemiological Study Measuring Burden of Hemophilia in Developing Countries publication-title: TH Open – volume: 25 start-page: 236 year: 2019 end-page: 243 article-title: Haemophilia in Côte d'Ivoire (the Ivory Coast) in 2017: Extensive data collection as part of the World Federation of Hemophilia's twinning programme publication-title: Haemophilia – volume: 24 start-page: 3 issue: Suppl. 5 year: 2018 end-page: 196 article-title: AFATH: the AFH international action program to serve the WFH vision in African French speaking countries [abstract] publication-title: Haemophilia – volume: 9 start-page: 239 year: 2018 end-page: 249 article-title: The role of patient and healthcare professionals in the era of new hemophilia treatments in developed and developing countries publication-title: Ther Adv Hematol – volume: 2 start-page: 39 issue: Suppl 1 year: 2018 end-page: 41 article-title: Hemophilia in the developing world: transforming lives through international collaboration publication-title: Blood Adv – volume: 25 start-page: 859 year: 2019 end-page: 866 article-title: Implementation and assessment of a self‐ and community‐based rehabilitation programme in patients with haemophilia from Côte d'Ivoire publication-title: Haemophilia – volume: 3 start-page: 1 issue: Suppl 1 year: 2019 end-page: 4 article-title: Improving access to hemophilia care in sub‐Saharan Africa by capacity building publication-title: Blood Adv – volume: 14 start-page: 26 year: 2019 article-title: Hemophilia carrier's awareness, diagnosis, and management in emerging countries: a cross‐sectional study in Côte d'Ivoire (Ivory Coast) publication-title: Orphanet J Rare Dis – volume: 171 start-page: 540 year: 2019 end-page: 546 article-title: Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta‐analytic Approach Using National Registries publication-title: Ann Intern Med – start-page: 383 year: 2018 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10.1182/bloodadvances.2019GS121537 – ident: e_1_2_9_4_1 doi: 10.1055/s-2005-922228 – ident: e_1_2_9_21_1 doi: 10.1111/hae.13818 – ident: e_1_2_9_13_1 doi: 10.1186/s13023-019-1005-9 – ident: e_1_2_9_20_1 – ident: e_1_2_9_22_1 doi: 10.1111/hae.14046 – ident: e_1_2_9_10_1 doi: 10.1182/bloodadvances.2018GS112562 – ident: e_1_2_9_6_1 doi: 10.1007/s12288-015-0562-x – volume: 10 start-page: 14 issue: 4 year: 2004 ident: e_1_2_9_3_1 article-title: Haemophilia in the developing world: successes, frustrations and opportunities publication-title: Haemophilia contributor: fullname: Ortiz Z – ident: e_1_2_9_14_1 doi: 10.1111/hae.13409 – ident: e_1_2_9_17_1 doi: 10.1177/2040620718784830 – ident: e_1_2_9_5_1 doi: 10.1111/hae.13230 – volume: 27 start-page: e190 issue: 3 year: 2019 ident: e_1_2_9_8_1 article-title: HAEMOcare: The First International Epidemiological Study Measuring Burden of Hemophilia in Developing Countries publication-title: TH Open contributor: fullname: Gupta N – volume: 24 start-page: 3 issue: 5 year: 2018 ident: e_1_2_9_11_1 article-title: AFATH: the AFH international action program to serve the WFH vision in African French speaking countries [abstract] publication-title: Haemophilia contributor: fullname: Sannié T – ident: e_1_2_9_15_1 doi: 10.1097/ACM.0000000000000603 – ident: e_1_2_9_16_1 – ident: e_1_2_9_23_1 doi: 10.1111/hae.14040 – ident: e_1_2_9_9_1 doi: 10.7326/M19-1208 – ident: e_1_2_9_19_1 doi: 10.1111/hae.13833 |
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There is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and... There is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and low-income countries... Abstract Introduction There is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and... IntroductionThere is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and low‐income... INTRODUCTIONThere is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and low-income... Introduction: There is a lack of joint recommendations by healthcare professionals (HCP) and patient organizations when a partnership between high and... |
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SubjectTerms | Africa association haemophilia Hemophilia Hemophilia A Humans Life Sciences methodology partnership Patients World Federation of Hemophilia |
Title | How to implement medical and patient associations in low‐income countries: A proposition from the African French Alliance for the Treatment of Haemophilia (AFATH) |
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