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Associated data may consist of large variations of informational subtypes e.g. genetic characteristics and their epigenetic modifications, biomarkers or even individual lifestyle factors. Present innovations in the field of information technology have already enabled the procession of increasingly large amounts of such data (\u2018volume\u2019) from various sources (\u2018variety\u2019) and varying quality in terms of data accuracy (\u2018veracity\u2019) to facilitate the generation and analyzation of messy data sets within a short and highly efficient time period (\u2018velocity\u2019) to provide insights into previously unknown connections and correlations between different items (\u2018value\u2019). As such developments are characteristics of Big Data approaches, Big Data itself has become an important catchphrase that is closely linked to the emerging foundations and approaches of PM. However, as ethical concerns have been pointed out by experts in the debate already, moral concerns by stakeholders such as patient organizations (POs) need to be reflected in this context as well. We used an empirical-ethical approach including a website-analysis and 27 telephone-interviews for gaining in-depth insight into German POs\u2019 perspectives on PM and Big Data. Our results show that not all POs are stakeholders in the same way. Comparing the perspectives and political engagement of the minority of POs that is currently actively involved in research around PM and Big Data-driven research led to four stakeholder sub-classifications: \u2018mediators\u2019\u00a0support research projects through facilitating researcher\u2019s access to the patient community while simultaneously selecting projects they preferably support while \u2018<jats:italic>cooperators<\/jats:italic>\u2019 tend to contribute more directly to research projects by providing and implemeting\u00a0patient perspectives. \u2018<jats:italic>Financers<\/jats:italic>\u2019 provide financial resources. \u2018<jats:italic>Independents<\/jats:italic>\u2019 keep control over their collected samples and associated patient-related information with a strong interest in making autonomous decisions about its scientific use. A more detailed terminology for the involvement of POs as stakeholders facilitates the adressing of their aims and goals. Based on our results, the \u2018<jats:italic>independents<\/jats:italic>\u2019 subgroup is a promising candidate for future collaborations in scientific research. Additionally, we identified gaps in PO\u2019s knowledge about PM and Big Data. Based on these findings, approaches can be developed to increase data and statistical literacy. This way, the full potential of stakeholder involvement of POs can be made accessible in discourses around PM and Big Data.<\/jats:p>","DOI":"10.1007\/s10916-020-01702-7","type":"journal-article","created":{"date-parts":[[2021,2,22]],"date-time":"2021-02-22T05:03:11Z","timestamp":1613970191000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":19,"title":["My Data, My Choice? \u2013 German Patient Organizations\u2019 Attitudes towards Big Data-Driven Approaches in Personalized Medicine. 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