Educating Providers About Down Syndrome Via an Integrated Marketing Module
This grant has been funded for two years (2003-2005) by the AUCD-CDC Cooperative Agreement. A large volume of exceptional training materials/resources on Down Syndrome currently exists. However, the application of this research by medical providers when counseling parents is less than satisfactory. Current literature indicates that dissemination of information alone is not adequate to affect utilization by physicians. To effectively close the information gap, extensive primary research is needed to identify the specific needs and preferences of physicians and parents in terms of content, desired format, means of delivery, language, etc. The model proposed herein relies heavily on user input, content experts, secondary research, and the continuous refinements of conceptual models.
The Goal of the project is to enhance the quality of information and services provided to children with Down Syndrome and their families, and to develop a replicable marketing model for future training programs.
Cooperation has been obtained from an informal multi-organization, multi-discipline national advisory committee, which will provide national support to maximize access to the targeted audiences. Surveys, focus groups and discovery interviews have been conducted in CA, MA and IA to define training needs and dissemination. This committee will also assist in the creation of a mechanism for distribution in partnership with national organizations (American Academy of Pediatrics, American Academy of Family Physicians, March of Dimes, National Down Syndrome Society, National Down Syndrome Congress) and CDC.
A panel of content experts will oversee content development for the training module, responding to provider and parent-defined needs. Field-testing of module will be performed in each of the three states.
The project team will develop recommended guidelines for replicating the model. Research methodology, national advisory committee and development of the product dissemination plan will be evaluated and lessons learned as well as recommendations for purposes of replicating the model will be submitted to CDC and AUCD. The resulting dissemination model will provide the tools to implement a nationwide launch of an ongoing, scalable training method for health care providers on relevant infrequently occurring medical conditions, especially genetic disorders.
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