How to design a community-based thalassaemia prevention programme
Two main points to consider planning a thalassaemia prevention programme are, the characteristics of the health system and natural behavior of the disease.
Health system in many developing countries is a fragmented system and does not have capacity to serve a community-based programme. Different methods are needed to harmonise the fragmented components. Forming scientific advisory committee and professional sub-committees help gathering fragments of a discipline and different disciplines to concentrate on the programme.
Main structures needed to control the disease are genetics education, screening, counseling, diagnosis and surveillance.
The orientation of the health system has to be complemented with the genetics education. Stratification of the system helps education of personnel level by level.
To provide genetic counseling a person with a position in the health system and with a background of public health can be defined. Forming a network of these personnel with an educational programme makes the service available.
Equipped laboratories are necessary to screen target groups. Labs in privet and governmental sections can work together if are organised in a unique network.
Genetic diagnostic labs are not widely available in many developing countries. To serve a community based genetic programme the existent labs have to be carefully planned. A network of the labs can provide the programme with needed services.
The most difficult part of planning a community-based programme is designing surveillance system. This system has to collect data on relevant health events to plan actions accordingly. A distributed management system using stratification and integration methods can be a solution.
Such a huge programme needs a conductor who factually and strongly believes in philosophy of community-based programme.