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[Delphi survey on barriers, concerns and feasibility options for data-based healthcare for people with intellectual
Saskia Gollasch1, Ute Karbach1
1Universität zu Köln, Humanwissenschaftliche Fakultät & Medizinische Fakultät und Uniklinik Köln, Institut für Medizinsoziologie, Versorgungsforschung und Rehabilitationswissenschaft, Lehrstuhl für Versorgungsforschung in der Rehabilitation, Köln, Deutschland.
Background:
Even 15 years after the ratification of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), the data available to describe the health services and medical care for people with so-called intellectual disabilities (PWID) in Germany is still inadequate. This means that it is currently not, or only to a limited extent, possible to adequately describe the utilization of care or the care pathways of this vulnerable population group.
Methods:
The explorative study is based on a 2-stage policy Delphi survey on the feasibility options of data-based care for the PWID group with n = 10-12 experts from the care sector and from healthcare research. The thematic analyses of two online focus groups serve as the basis for the development of instruments for the two structured Delphi survey rounds.
Results:
The survey revealed, among other things, that the additional (time) expenditure resulting solely from the presence of an intellectual disability could be coded as relevant to billing. The group of people with intellectual disabilities and greater care needs could thus be better identified in the routine data than via ICD-10 diagnoses.
Conclusion:
This kind of data-based demand planning for the group of people with intellectual disabilities and a high level of healthcare needs may result in a group benefit. Whether and just how diverse people with intellectual disabilities will position themselves in this regard must be the subject of future, ideally participatory, research work.
