Founding process of a registry of people with disabilities – methodological challenges and overcoming strategies

Milićević, Milena and Simeunović, Barbara (2020) Founding process of a registry of people with disabilities – methodological challenges and overcoming strategies. Belgrades school of defectology, 26 (2). pp. 19-30. ISSN 0354-8759

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Abstract

!e bene"ts of having a database or registry of people with disabilities, methodological obstacles and their overcoming strategies are identi"ed in this current topic. Bene"ts include a summarization of the clinical and demographic pro"le of disabilities at a particular geographic region, providing support for overcoming systemic barriers, improvement of health policy, special services recognition and rendering, customized programs and regulated management of available resources. Methodological barriers refer to the lack of standardization in case-by-case assessments and the consequently questionable accuracy of diagnostic and anamnestic data. A#ention should be paid to the use of various de"nitions, classi"cations and coding algorithms. !e quality of data obtained $om systems that were primarily founded for administrative and "nancial purposes may di%er signi"cantly $om the data collected by analysing internal databases of health and educational or social welfare institutions. As a conclusion, important steps for the initiation process of founding a national or regional database or registry of people with disabilities are introduced and listed. !ey should incorporate an analysis of the implementation of various founding models, appropriate strategies selection, an examination of available data sources and information systems, veri"cation of data standards, and methodology of collecting data, including an electronic exchange of health-related data.

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