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Artificial Intelligence and Machine Learning for Digital Pathology pp 38–55Cite as

Supporting the Donation of Health Records to Biobanks for Medical Research

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Part of the book series: Lecture Notes in Computer Science ((LNAI,volume 12090))

Abstract

Biobanks are infrastructures for medical research providing biological material together with data describing these materials and their donors. Annotating biological samples with health related data of the donors is cumbersome, in particular when these data are produced by several independent data sources. We argue that the value of the samples stored in a biobank increases with a more wholesome availability of medical data of the donors and thus we argue for a system encouraging individuals to complement the donation of biological material with the donation of data. We explore the requirements for a system managing the donation of data as a first step for the design of a donation management system for biobanks.

This work has been supported by the Austrian Bundesministerium für Bildung, Wissenschaft und Forschung within the project bbmri.at (GZ 10.470/0016-II/3/2013 and 10.470/0010-V/3c/2018).

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References

  1. Datenschutz-Anpassungsgesetz 2018 - Wissenschaft und Forschung - WFDSAG 2018. BGBl. I Nr. 31/2018

    Google Scholar 

  2. European commission: ehealth stakeholder group report perspectives and recommendations on interoperability (2014). http://ec.europa.eu/newsroom/dae/document.cfm?doc_id=5168. Accessed Mar 2019

  3. elga.gv.at: ELGA - die elektronische Gesundheitsakte (official governmental website) (2016). https://www.elga.gv.at/index.html. Accessed Mar 2019

  4. eur-lex.europa.eu: regulation (EU) 2016/679 of the European parliament and of the council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing directive 95/46/ec (general data protection regulation) (2016). http://eur-lex.europa.eu. Accessed Oct 2016

  5. Gesamte Rechtsvorschrift für Gesundheitstelematikgesetz 2012, Fassung vom 23.01.2017 (2016). https://www.ris.bka.gv.at. Accessed Oct 2016

  6. Gesetzliche Grundlagen von ELGA (2016). https://www.elga.gv.at. Accessed Oct 2016

  7. Hl7 international: clinical document architecture, CDA release 2 (2016). https://www.hl7.org. Accessed Oct 2016

  8. loinc.org: logical observation identifiers names and codes (2016). https://loinc.org. Accessed Oct 2016

  9. Parlament.gv.at: Vereinbarung gem. Art. 15a B-VG zur Sicherstellung der Patientenrechte (Patientencharta) (1268) (2016). https://www.parlament.gv.at/PAKT/VHG/XXII/I/I_01268/index.shtml. Accessed Oct 2016

  10. WMA declaration of Taipei on ethical considerations regarding health databases and biobanks. Adopted by the 53rd WMA general assembly, Washington, DC, USA, October 2002 and revised by the 67th WMA general assembly, Taipei, Taiwan, October 2016. http://www.wma.net/en/30publications/10policies/d1

  11. Article 29 data protection working party: guidelines for identifying a controller or processor’s lead supervisory authority. 16/en wp 244. Adopted on 13 December 2016 (2017). http://ec.europa.eu/newsroom/dae/document.cfm?doc_id=5168. Accessed Mar 2017

  12. Article 29 data protection working party: Guidelines on data protection officers. 16/en wp 243. Adopted on 13 December 2016 (2017). http://ec.europa.eu/information_society/newsroom/image/document/2016-51/wp244_en_40857.pdf. Accessed Mar 2017

  13. Article 29 data protection working party: guidelines on the right to data portability. 16/en wp 242. Adopted on 13 December 2016 (2017). http://ec.europa.eu/newsroom/dae/document.cfm?doc_id=5168. Accessed Mar 2017

  14. The EU general data protection regulation - answers to frequently asked questions 1.0. prepared by the BBMRI common service ELSI 1 May 2016 (2017). http://ec.europa.eu/information_society/newsroom/image/document/2016-51/wp242_en_40852.pdff. Accessed Jan 2017

  15. Asslaber, M., et al.: The genome austria tissue bank (GatiB). Pathology 74, 251–258 (2007)

    Google Scholar 

  16. Dabringer, C., Eder, J.: Retrieving samples from biobanks. In: Khuri, S., Lhotská, L., Pisanti, N. (eds.) ITBAM 2010. LNCS, vol. 6266, pp. 172–185. Springer, Heidelberg (2010). https://doi.org/10.1007/978-3-642-15020-3_16

    Chapter  Google Scholar 

  17. Eder, J., Dabringer, C., Schicho, M., Stark, K.: Information systems for federated biobanks. In: Hameurlain, A., Küng, J., Wagner, R. (eds.) Transactions on Large-Scale Data- and Knowledge-Centered Systems I. LNCS, vol. 5740, pp. 156–190. Springer, Heidelberg (2009). https://doi.org/10.1007/978-3-642-03722-1_7

    Chapter  Google Scholar 

  18. Eder, J., Gottweis, H., Zatloukal, K.: IT solutions for privacy protection in biobanking. Public Health Genomics 15, 254–262 (2012)

    Article  Google Scholar 

  19. Eder, J., Koncilia, C.: Modelling changes in ontologies. In: Meersman, R., Tari, Z., Corsaro, A. (eds.) OTM 2004. LNCS, vol. 3292, pp. 662–673. Springer, Heidelberg (2004). https://doi.org/10.1007/978-3-540-30470-8_77

    Chapter  Google Scholar 

  20. Eder, J., Koncilia, C., Morzy, T.: A model for a temporal data warehouse. In: Proceedings of Open Enterprise Solutions: Systems, Experiences and Organizations (OES-SEO 2001), Venice, pp. 48–54 (2001)

    Google Scholar 

  21. Editorial. Incentivizing data donation. Nat. Biotechnol. 33(9), 885 (2015)

    Google Scholar 

  22. Hainaut, P., Vaught, J., Zatloukal, K., Pasterk, M.: Biobanking of Human Biospecimens: Principles and Practice. Springer, Heidelberg (2017). https://doi.org/10.1007/978-3-319-55120-3

    Book  Google Scholar 

  23. Henriksen, A.: Using fitness trackers and smartwatches to measure physical activity in research: analysis of consumer wrist-worn wearables. J. Med. Internet Res. 20(3), e110 (2018)

    Article  Google Scholar 

  24. Hofer-Picout, P., et al.: Conception and implementation of an Austrian biobank directory integration framework. Biopreservation Biobank. 15, 332–340 (2017)

    Article  Google Scholar 

  25. Jankel, C., Speedie, S.: Detecting drug interactions: a review of the literature. DICP Ann. Pharmacother. 24(10), 982–9 (1990)

    Google Scholar 

  26. Kaye, J., et al.: Dynamic consent: a patient interface for twenty-first century research networks. Eur. J. Hum. Genet. 23(2), 141–146 (2015). PMC. Web. 3 May 2017

    Google Scholar 

  27. Klingström, T., Bongcam-Rudloff, E., Reichel, J.: A primer for managing international collaboration and legal compliance in biobank based genomics. Technical report, PeerJ Preprints (2016)

    Google Scholar 

  28. Kuhlmann, J., Mück, W.: Clinical-pharmacological strategies to assess drug interaction potential during drug development. Drug Saf. Int. J. Med. Toxicol. Drug Exp. 24, 715–725 (2001)

    Google Scholar 

  29. Lazouski, A., Martinelli, F., Mori, P.: Usage control in computer security: a survey. Comput. Sci. Rev. 4(2), 81–99 (2010)

    Article  Google Scholar 

  30. Malone, D., et al.: Assessment of potential drug-drug interactions with a prescription claims database. Am. J. Health Syst. Pharm. AJHP 62, 1983–1991 (2005). Official journal of the American Society of Health-System Pharmacists

    Article  Google Scholar 

  31. Pichler, H., Eder, J.: Supporting donors to donate data for medical research. bbmri.at work package 2 - ELGA report part 2, version 5. Technical report, Alpen-Adria University Klagenfurt, Department of Informatics Systems (2017)

    Google Scholar 

  32. Scripture, C., Figg, W.: Drug interactions in cancer therapy. Nat. Rev. Cancer 6(7), 546–58 (2006)

    Article  Google Scholar 

  33. Shaw, D.M., Gross, J.V., Erren, T.C.: Data donation after death. EMBO Rep. 17(1), 14–17 (2016)

    Article  Google Scholar 

  34. Skatova, A., Goulding, J.: Donate your data. How your digital footprint can be used for the public good (2015). http://theconversation.com/donate-your-data-how-your-digital-footprint-can-be-used-for-the-public-good-35525. Accessed April 2017

  35. Skatova, A., Ng, E., Goulding, J.: Data donation: sharing personal data for public good? In: Digital Economy All Hands Meeting 2014 (2014)

    Google Scholar 

  36. Staffa, J.A., Chang, J., Green, L.: Cerivastatin and reports of fatal rhabdomyolysis. N. Engl. J. Med. 346(7), 539–540 (2002). PMID: 11844864

    Article  Google Scholar 

  37. Tatonetti, N.P., et al.: Detecting drug interactions from adverse-event reports: interaction between paroxetine and pravastatin increases blood glucose levels. Clin. Pharmacol. Ther. 90(1), 133–142 (2011)

    Article  Google Scholar 

  38. Wichmann, H.-E., et al.: Comprehensive catalog of European biobanks. Nat. Biotechnol. 29(9), 795–797 (2011)

    Article  Google Scholar 

  39. Zhan, C., et al.: Suboptimal prescribing in elderly outpatients: potentially harmful drug-drug and drug-disease combinations. J. Am. Geriatr. Soc. 53, 262–267 (2005)

    Article  Google Scholar 

  40. Zhang, X., Parisi-Presicce, F., Sandhu, R., Park, J.: Formal model and policy specification of usage control. ACM Trans. Inf. Syst. Secur. 8(4), 351–387 (2005)

    Article  Google Scholar 

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Acknowledgments

The authors thank Anna Durnova, Heimo Müller, Karine Sargsyan, Cornelia Stumptner, Melanie Goisauf, Johannes Starkbaum, Iris Eisenberger, Elisabeth Hödl, Margot Ham-Rubisch, and Helga Willinger who provided us with insights into the legal, ethical and organizational context and requirements, were willing to discuss our rough ideas, and provided very valuable feedback on draft versions of this report.

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Authors and Affiliations

  1. Department of Informatics-Systems, Alpen-Adria University Klagenfurt, Klagenfurt, Austria

    Horst Pichler & Johann Eder

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  1. Horst Pichler
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  2. Johann Eder
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Correspondence to Johann Eder .

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Editors and Affiliations

  1. Medical University of Graz, Graz, Austria

    Andreas Holzinger

  2. University of Alberta, Edmonton, AB, Canada

    Randy Goebel

  3. University of Alberta, Edmonton, AB, Canada

    Michael Mengel

  4. Medical University of Graz, Graz, Austria

    Heimo Müller

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Pichler, H., Eder, J. (2020). Supporting the Donation of Health Records to Biobanks for Medical Research. In: Holzinger, A., Goebel, R., Mengel, M., Müller, H. (eds) Artificial Intelligence and Machine Learning for Digital Pathology. Lecture Notes in Computer Science(), vol 12090. Springer, Cham. https://doi.org/10.1007/978-3-030-50402-1_3

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  • DOI: https://doi.org/10.1007/978-3-030-50402-1_3

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-50401-4

  • Online ISBN: 978-3-030-50402-1

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