@inproceedings{RushSchmidRaptis, author = {Rush, Logan and Schmid, Marina and Raptis, Georgios}, title = {Privacy Challenges in Genomic Data: A Scoping Review of Risks, Mitigation Strategies, and Research Gaps.}, series = {Information and Communication Technology: 13th International Symposium, SOICT 2024, Danang, Vietnam, December 13-15, 2024, Proceedings, Part II}, booktitle = {Information and Communication Technology: 13th International Symposium, SOICT 2024, Danang, Vietnam, December 13-15, 2024, Proceedings, Part II}, publisher = {Springer}, address = {Singapore}, doi = {10.1007/978-981-96-4285-4_34}, pages = {416 -- 430}, abstract = {Advances in genomic research have created new privacy challenges. This scoping review analyzes the risks associated with the processing, storage, and sharing of genomic data including epigenetics, and examines current privacy protection strategies. It also attempts to identify research gaps in this area. Using the PRISMA methodology, 37 relevant studies were identified and analyzed. The results of the risk assessment can be grouped into four main themes: Risks posed by processing of functional genomic data, sharing of genomic data, patient (re-)identification, and dividuality, i.e. the extending of privacy risks to blood relatives. The identified risk mitigation strategies were systematically categorized into five classes: pre-release measures, governance, secure data processing and exchange, access restriction and transparency, anonymization and masking. However, there are some important research gaps that still need to be addressed. The current literature neglects to assess the likelihood of potential breaches and tends to focus only on assessing possible scenarios of privacy risks. It also mainly fails to assess the role of contextualized data and the effectiveness of policies and governance systems with respect to privacy risks.}, language = {en} } @article{DotterHaugSchnelletal., author = {Dotter, Caroline and Haug, Sonja and Schnell, Rainer and Raptis, Georgios and Weber, Karsten}, title = {Sharing health data for research purposes: results of a population survey in Germany}, series = {BMC health services research}, volume = {25}, journal = {BMC health services research}, publisher = {BMC}, doi = {10.1186/s12913-025-12706-9}, url = {http://nbn-resolving.de/urn:nbn:de:bvb:898-opus4-81622}, pages = {9}, abstract = {BACKGROUND: Increased use of health data has the potential to improve both health care and health policies. Several recent policy initiatives at the European and German legislative levels aim to increase the primary and secondary use of health data. However, little is known about general population views on health data access for research. Most studies are based on subsets defined by specific illnesses. METHODS: We commissioned a national computer-assisted dual-frame telephone survey (landline and mobile). Logit estimation models were used to identify predictors of willingness to provide access to health data to different organizations (universities in Germany, universities worldwide, German government organizations, pharmaceutical companies). RESULTS: A high willingness to share health data for research purposes is observed, depending on the specific data recipient. The willingness is highest for research at universities in Germany and German governmental organizations, and lowest regarding research by pharmaceutical companies. The main drivers for sharing health data are the level of trust in public institutions, the respondents' assessment of the seriousness and likelihood of data misuse, and the level of digital literacy. Age, gender, and level of education have small effects and do not determine the willingness to share health data for all organizations. CONCLUSION: We present evidence from a random sample of the German population. The results indicate widespread support among the population for providing access to health data for research purposes. Similar to findings in other countries, the willingness depends strongly on the recipient of the data. This paper evaluates the impact of various determinants - identified in previous qualitative and quantitative research - on the willingness of the German population to share health data. While previous studies have found that patients are generally more willing to share health data, we found that the presence of a medical precondition does not translate into respondents' unequivocal support for health data sharing. We identify privacy concerns, general trust, and digital literacy as key factors influencing the willingness to share health data. Therefore, policymakers and stakeholders need to ensure and communicate the necessary privacy protection measures to increase the willingness of the German population to share health data.}, language = {en} } @unpublished{CenkoWeimannRaptis, author = {Cenko, Egidia and Weimann, Thure Georg and Raptis, Georgios}, title = {Navigating the DiGA Jungle: A Taxonomy and Archetypal Framework of the German Digital Therapeutics Landscape}, doi = {10.64898/2025.12.30.25343225}, pages = {26}, abstract = {Digital therapeutics (DTx) are patient-facing apps designed to support individuals in their daily lives. Therefore, they have thepotential to revolutionize healthcare by empowering and engaging patients to become active players in their own care. Despitethe increasing adoption of DTx in national healthcare systems, research on their design remains limited. The present studyintroduces "DiGATax", a taxonomy designed to categorize and analyze DTx, including perspectives on content, interventiondelivery logic and technology, as well as the patient's interface, consolidating and expanding upon prior taxonomic work.Based on n = 44 applications retrieved from the German DiGA directory that demonstrated positive health outcomes, thetaxonomy is supported by empirical evidence. Additionally, the study contributes by presenting an archetype frameworkof DTx derived from a taxonomy-based cluster analysis. Further analyses offer insights into specific combinations of DTxcharacteristics across archetypes, the user interface as a key factor in their acceptance, and potential links between DTxdesign and health-related and user engagement outcomes. By offering new insights into DTx design, this study contributestowards more organized research and reporting, ultimately paving the way for the development of effective solutions. It alsomarks a further step towards Meta-DTx, which aim to align patient care for multimorbid patients under one umbrella.}, language = {en} }