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EIVE – Developing innovative health care concepts for rare diseases
[1]
- © EIVE
The aim of
this multi-partner project funded by the German Federal Ministry of
Education and Research is developing innovative health care concepts
for the management of rare diseases.
Sub-project: Improving
the provision and financing of assistive technology used in the
management of rare diseases.
Background:
People with rare diseases
often need assistive technology devices, which can be costly and
require substantial customization. An insurer’s refusal to cover an
expensive device can leave patients facing financial difficulties and
restrict their ability to participate in the normal activities of
daily life.Instead of a uniform system
for financing and reimbursing assistive technology, Germany has a
patchwork of contracts and agreements between insurers and providers,
both at the federal and state levels.
Aims:
- To
analyse problems in the financing and reimbursement of assistive
technology devices
that are used in the management of rare diseases.
- To
describe ways to improve the current situation.
Methods:
I. Data
from published and grey literature will be used to analyse payment
flows
and supply chain activities between the
various actors involved in the production
and
provision of assistive technology devices. The focus will be on the
following
rare diseases:
Ø
Marfan syndrome
Ø Epidermolysis bullosa
Ø Amyotrophic lateral sclerosis
(ALS) and Duchenne muscular dystrophy
Ø
Wilson’s disease
Ø NBIA (Neurodegeneration with brain iron accumulation)
II.
Telephone interviews will be conducted with patients concerning the
following
issues:
Ø
Problems in the provision of
assistive technology
Ø
Issues related to insurers’
coverage decisions/claims denials
III. The data
will be analysed, and the results will be used to identify and
describe
opportunities for improving the
financing and reimbursement of assistive
technology devices.
Project
partners |
---|
Berlin University of
Technology (Department of Technology and Innovation
Management) |
Berlin University of
Technology (Department of Health Care
Management) |
HelmholtzZentrum
München |
German Foundation for the
Chronically Ill |
University
of Erlangen-Nuremberg |
Institute
for Work and
Technology |
Links: http://www.eive.de/ [2]
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