Health Literacy | Digitization

Integrated Parkinson Care Networks: Addressing Complex Care in Parkinson Disease in Contemporary Society (iCARE-PD) – Ethical and Legal Issues

Duration : 07/2020-06/2022
Project Board
  • Dr. Tiago Mestre (University of Ottawa, Canada)
  • Prof. Dr. David Pedrosa (Philipps-Universität Marburg)
  • RA Dr. Björn Schmitz-Luhn
  • Prof. Dr. Christiane Woopen
  • Coordinator: Johanne Stümpel, M.Sc.
Project Team

Prof. Dr. Angelo Antonini (University of Padua, Italy) & Dr. Álvaro Sánchez-Ferro (hm-CINAC Centro Integral en Neurociencias, Spain)
Dr. Natalia del Campo (Centre Hospitalier Universitaire de Toulouse, France)
Dr. Ana Castro Caldas (Hospital de Santa Maria Lisbon, Portugal)
Nadège Costa (University Hospital of Toulouse, France) & Prof. Dr. Richard Dodel (Universität Duisburg-Essen)
Jordi Farré Coma (Universitat Rovira i Virgili, Spain)
Prof. Dr. Joaquim Ferreira (University of Lisbon, Portugal)
Dr. Tereza Hendl (Ludwig-Maximilians-Universität München)
Mariana Hernández-González Monje (hm-CINAC Centro Integral en Neurociencias, Spain)
Prof. Dr. Timothy Lynch (University College Dublin, Ireland)
Prof. Dr. Norberto Malpica (Universidad Rey Juan Carlos Madrid, Spain)
Prof. Dr. José Obeso (hm-CINAC Centro Integral en Neurociencias, Spain)
Prof. Dr. Dr. Evžen R?ži?ka (General University Hospital Prague, Czech Republic)
Ana Sendra Tosset (Universitat Rovira i Virgili, Spain)
Martin Srp (Charles University Prague, Czech Republic)

Funding Institution: BMBF

Federal Ministry of Education and Research


Parkinson's disease (PD) is a progressive neurological disease associated with physical, mental and cognitive symptoms impacting an estimated 6.2 million people worldwide (European Parkinson's Disease Association, 2017). Its incidence is expected to double by 2030. Motor symptoms such as movement problems, but also non-motor symptoms such as sleep disorders, anxiety and depression, can have a significant impact on the quality of life of affected persons and their relatives.

Considering these developments, it is urgently required to develop and implement an optimized care concept. On the one hand, this concept should be oriented towards the individual needs of those affected and their relatives. On the other hand, it should not only increase the subjective well-being of those affected by more efficient use of resources, but also open up disciplinary structures and strengthen interdisciplinary care concepts. This requires the availability of opportunities offered by digitalization and that society's use of resources be geared in a sustainable and targeted manner to the urgent needs of those affected and their families.

Research questions and objectives

The aim of the collaborative project is to develop and offer improved care services as soon as possible. Within the framework of the comprehensive international and transdisciplinary research programme iCARE-PD, innovative sustainable care models are to be developed. One approach is to strengthen integrated health care at home and in the local communities. In addition, there are opportunities to facilitate self-management in the daily handling of the disease. Furthermore, technology-supported solutions in particular can help in this respect.

Therefore, the collaborative project pursues various research objectives: First of all, the personal experiences and perceptions of patients with Parkinson's disease and their caregiving relatives in the participating countries will be surveyed in order to obtain a better understanding of their actual quality of life and to develop approaches for its improvement. Similarly, the existing social, economic and geographical barriers to managing the disease and managing the burden of disease will be identified together with those affected, in order to determine options for optimised care. Finally, technology-based eHealth solutions are developed and evaluated to support the daily management of the disease by those affected.

The contribution of the ceres subproject particularly consists in the development, application and evaluation of a comprehensive Parkinson-specific survey tool to assess the quality of life and thus to generate a greater understanding of the individual disease progression, health-related restrictions, experiences and other factors that determine the individual well-being of those affected. In addition, ethical and legal challenges as well as social impacts of technology-based support applications are examined thoroughly. Finally, the application for home-based and integrated health care, developed in the collaborative project, will be guided in its development and its ethically and legally accountable and patient-oriented design will be ensured.



Johanne Stümpel, M.Sc.

ceres – Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health
Universitätsstr. 91
50931 Cologne

+49 (0)221 - 470 89115
johanne.stuempel [at]