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Dataprotection & Ethics

Dataprotection

Data protection, data security and the patient's privacy have the highest priority at HiGHmed.

HiGHmed continuously develops its data protection concept according to best practice in the industry. It is based on the recommendation of the 87th Conference of the Data Protection Officers of the Federal Government and the Länder of 27 and 28 March 2014 in Hamburg for medical research facilities in compliance with the Guideline on Data Protection in medical research projects of the TMF (Theorie und Methoden Plattform).

 

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Ethics

Ethics

HiGHmed undertakes interdisciplinary research on ethical, political and social issues with regard to the collection, linking, and use of patient data in medical research and health care. HiGhmed enables leading experts from social, political and cultural sciences, philosophy and meta-research to work togehther. This interdisciplinary research group has broad experience in empirical stakeholder research, research ethics, practice-oriented ethics and governance research.

Data-based knowledge-building and decision-making, including the translation of research findings into clinical and public health applications, imply significant opportunities and challenges for individual patients, public health, medical professionalism and healthcare financing. A central aim of the Work Package “Ethics & Stakeholders” is the evidence-based development of practice-oriented frameworks and recommendations for governance solutions in the field of big data technologies. It has immediate relevance for the consortium as well as for ongoing national and international debates.

The HiGHmed MeDICs (medical data integration centres) work on the basis of two fundamental principles: 'Patient First' and FAIR-data (Findable, Accessible, Interoperable, Reusable). On this basis, solutions and services are made available to researchers with regard to data integration, data analysis and exchange, subsequent use of data and data publication in clinical research. This includes the following issues:

  • Consent and disclosure: Procedures and documents to obtain broad consent will be evaluated and further developed to become more effective and efficient.
  • International data sharing and data access: Based on policy analyses, systematic reviews, and stakeholder research, HiGHmed will develop policy frameworks and recommendations dealing with the current challenges and opportunities regarding the access to and sharing of data.
  • Clinical & public health decision making: A conceptual and normative analysis of the conflicts arising between personalised, big data-driven medical decision making and the principles of evidence-based medicine will be complemented with an empirical-ethical assessment of stakeholders’ perceptions, e.g. regarding patient participation and incidental findings. These analyses will result in consensus-based recommendations for the practical handling of big data-based decision making in the clinical and public health context.