Incorporation of Multiple Sources into IT – and Data Protection Concepts: Lessons Learned from the FARKOR Project

Lindörfer, Doris; Mansmann, Ulrich and Reinhardt, Isabel (16. June 2020): Incorporation of Multiple Sources into IT – and Data Protection Concepts: Lessons Learned from the FARKOR Project. In: Studies in Health Technology and Informatics, No. 270: pp. 262-266

Abstract

The IT- and data protection concept of the FAmiliäres Risiko für das KOloRektale Karzinom (FARKOR) project will be presented. FARKOR is a risk adapted screening-project in Bavaria, Germany focusing on young adults with familial colorectal cancer (CRC). For each participant, data from different sources have to be integrated: Treatment records centrally administered by the resident doctors association (KVB), data from health insurance companies (HIC), and patient reported lifestyle data. Patient privacy rights must be observed. Record Linkage is performed by a central independent trust center. Data are decrypted, integrated and analyzed in a secure part of the scientific evaluation center with no connection to the internet (SECSP). The presented concept guarantees participants privacy through different identifiers, separation of responsibilities, data pseudonymization, public-private key encryption of medical data and encrypted data transfer.

• Item Type: Journal article
• Form of publication: Publisher's Version
• Keywords: Data integration; HIC data; pseudonymization; data encryption
• Faculties: Medicine > Institute for Medical Information Processing, Biometry and Epidemiology
• Subjects: 000 Computer science, information and general works > 000 Computer science, knowledge, and systems; 600 Technology > 610 Medicine and health
• ISBN: 978-1-64368-082-8
• ISSN: 0926-9630
• Place of Publication: Amsterdam
• Language: English

References

[1] KVB, Projekt, FARKOR: Vorsorge bei familiärem Risiko für das kolorektale Karzinom, Available at: https://www.kvb.de/abrechnung/verguetungsvertraege/farkor/ (Accessed: Jan 7, 2020). [2] S. Hoffmann, A. Crispin, D. Lindoerfer, G. Sroczynski, U. Siebert, U. Mansmann, FARKOR: Evaluating the effects of a risk-adapted screening program for familial colorectal cancer in individuals between 25 and 50 years of age in a prospective population-based intervention study, BMC Gastroenterology. [submitted]. [3] General Data Protection Regulation GDPR, Available at: https://gdpr-info.eu/ (Accessed: Jan 7, 2020). [4] D. Lindoerfer, U. Mansmann, IT Infrastructure of an Oncological Trial Where Xenografts Inform Individual Second Line Treatment Decision, Stud Health Technol Inform, 235 (2017), 226-230. [5] T.M. Deserno, D. Haak, V. Brandenburg, V. Deserno, C. Classen, P. Specht, Integrated Image Data and Medical Record Management for Rare Disease Registries. A General Framework and its Instantiation to the German Calciphylaxis Registry, J Digit Imaging, 27:6 (2014), 702-713. [6] S. Sherman, O. Shats, E. Fleissner, G. Bascom, K. Yiee, M. Copur, K. Crow, J. Rooney, Z. Mateen, M.A. Ketcham, J. Feng, A. Sherman, M. Gleason, L. Kinarsky, E. Silva-Lopez, J. Edney, E. Reed, A. Berger, K. Cowan, Multicenter breast cancer collaborative registry, Cancer Inform 10 (2011), 217– 226. [7] H. Aamot, C.D. Kohl, D. Richter, P. Knaup-Gregory, Pseudonymization of patient identifiers for translational research. BMC Med Inform Decis Mak 13, 75 (2013). [8] T. Michelsen, C. Lins, S. Gudenkauf, A. Hein, C. Lüpkes, Privacy by Design for Integrated Case and Care Management: Receiver-Oriented Encryption in STROKE OWL, Stud Health Technol Inform, 258 (2019), 110-114. [9] N. Adam, T. White, B. Shafiq, J. Vaidya, X. He, Privacy preserving integration of health care data, AMIA Annu Symp Proc, 11 (2007), 1-5. [10] M. Bialke, P. Penndorf, T. Wegner, T. Bahls, C. Havemann, J. Piegsa, W. Hoffmann, A workflowdriven approach to integrate generic software modules in a Trusted Third Party, J Transl Med. 13, 176 (2015). [11] TMF e.V., Available at: http://www.tmf-ev.de/ (Accessed: Jan 7, 2020).