Int. J. Neonatal Screen 2020; 6: 76. doi: 10.3390/ijns6040076
CLAN (Caring and Living as Neighbours) is an Australian non-governmental organisation (NGO) committed to a rights-based approach to optimizing quality of life for children and young people living with CAH and other chronic health conditions in resource-limited settings This paper used exploratory case study as a method to describe the seven phases of the action cycle in the Knowledge To Action (KTA) framework used by CLAN as it relates to congenital adrenal hyperplasia (CAH) It highlights the role of the community of patients with CAH
This very comprehensive paper describes the 7 stages of the KTA framework used by CLAN through cases studies in Vietnam, Philippines, Indonesia and Pakistan: 1. Identify the problem; 2. Adapt knowledge to local context; 3. Assess barriers to knowledge use; 4. Select, tailor and implement interventions; 5. Monitor knowledge use; 6. Evaluate outcomes and 7. Sustain knowledge use. You should look at this article as a How to paper that guides pediatric endocrinologists who wish to enable better access to care for their patients. This article also highlights the need to involve all stakeholders: the community of patients but also the health professionals from low- and high-resource settings, the global and national pharmaceutical industry, and the health authorities. Importantly, in CLANs framework, emphasis is put on the role of the community of children with CAH and their families, which plays a central role in improving access to optimal care in children with CAH. It Is suggested that one of the first steps towards this goal is to mobilize and engage patients. The power for change and successful advocacy of patients organisations has been well demonstrated in high resource settings. Unfortunately, this is not commonly performed in low resource settings. This article illustrates how we, pediatric endocrinologists, can play a major role in driving this process.