Abstract
Healthcare research data is typically produced, curated, and used by scientists, physicians, and other experts that have little or no professional affinity to programming and IT system design. In the context of evidence-based medicine or translational medicine, however the production, reliability, and long term availability of high quality and high assurance data is of paramount importance. In this paper we reflect on the data management needs we encountered in our experience as associated partners of a large interdisciplinary research project coordinated at the Cancer Metabolism Research Group, Institute of Biomedical Sciences at University of São Paulo in Brazil. Their research project involves extensive collection of detailed sample data within a complicated environment of clinical and research methods, medical, assessment, and measurement equipment and the regulatory requirements of maintaining privacy, data quality and security.
We use this example as an illustrative case of a category of needs and a diversity of professional and skills profiles that is representative of what happens today in any large scale research endeavor. We derive a catalogue of requirements that an IT system for the definition and management of data and processes should have, how this relates to the IT development and XMDD philosophy, and we briefly sketch how the DyWA + jABC combination provides a foundation for meeting those needs.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Preview
Unable to display preview. Download preview PDF.
References
Epirare, the European platform for rare disease registries, http://www.epirare.eu/
Evidence-based medicine, http://ebm.bmj.com/site/about/whyread.xhtml
Global rare diseases patient registry and data repository, http://rarediseases.info.nih.gov/research/pages/43/global-rare-disease-patient-registry-and-data-repository
Argilés, J.M., Busquets, S., López-Soriano, F.J.: Anti-inflammatory therapies in cancer cachexia. European Journal of Pharmacology 668(suppl. 1), S81–S86 (2011), http://www.sciencedirect.com/science/article/pii/S0014299911007783 , pharma-Nutrition
Rasche, C., Margaria, T., von Reinersdorff, A.B.: Value delivery through it-based healthcare architectures: towards a competence-based view of services. 25 Jahre ressourcen- und kompetenzorientierte Forschung: der kompetenzbasierte Ansatz auf dem Weg zum Schlüsselparadigma in der Managementforschung, pp. 417–443 (2010)
Clarke, E.M., Grumberg, O., Peled, D.A.: Model Checking. The MIT Press, Cambridge (1999)
European Organisation for Research and Treatment of Cancer (EORTC): Qlq-c30: quality of life questionnaire, http://groups.eortc.be/qol/eortc-qlq-c30
Evans, W.J., Morley, J.E., Argilés, J., Bales, C., Baracos, V., Guttridge, D., Jatoi, A., Kalantar-Zadeh, K., Lochs, H., Mantovani, G., Marks, D., Mitch, W.E., Muscaritoli, M., Najand, A., Ponikowski, P., Rossi Fanelli, F., Schambelan, M., Schols, A., Schuster, M., Thomas, D., Wolfe, R., Anker, S.D.: Cachexia: a new definition. Clin. Nutr. 27(6), 793–799 (2008)
Fearon, K., Strasser, F., Anker, S.D., Bosaeus, I., Bruera, E., Fainsinger, R.L., Jatoi, A., Loprinzi, C., MacDonald, N., Mantovani, G., Davis, M., Muscaritoli, M., Ottery, F., Radbruch, L., Ravasco, P., Walsh, D., Wilcock, A., Kaasa, S., Baracos, V.E.: Definition and classification of cancer cachexia: an international consensus. The Lancet Oncology 12(5), 489–495 (2011)
Frohme, M.: Agile Domänenmodellierung für prozessgesteuerte Webanwendungen. Bachelor thesis, TU Dortmund (2013)
Jonsson, B., Margaria, T., Naeser, G., Nyström, J., Steffen, B.: Incremental requirement specification for evolving systems. Nordic J. of Computing 8, 65–87 (2001), http://dl.acm.org/citation.cfm?id=774194.774199
Jörges, S., Lamprecht, A.L., Margaria, T., Schaefer, I., Steffen, B.: A Constraint-based Variability Modeling Framework. International Journal on Software Tools for Technology Transfer (STTT) 14(5), 511–530 (2012), http://www.springerlink.com/content/e453185h7726137l/
Jörges, S., Margaria, T., Steffen, B.: Genesys: service-oriented construction of property conform code generators. Innovations in Systems and Software Engineering 4(4), 361–384 (2008)
Lamprecht, A.-L.: User-Level Workflow Design. LNCS, vol. 8311. Springer, Heidelberg (2013)
Lamprecht, A.-L., Margaria, T. (eds.): Process Design for Natural Scientists - An Agile Model-Driven Approach. CCIS, vol. 500. Springer, Heidelberg (2014)
Lamprecht, A.-L., Margaria, T., Steffen, B.: Seven Variations of an Alignment Workflow - An Illustration of Agile Process Design and Management in Bio-jETI. In: Măndoiu, I., Wang, S.-L., Zelikovsky, A. (eds.) ISBRA 2008. LNCS (LNBI), vol. 4983, pp. 445–456. Springer, Heidelberg (2008), http://dx.doi.org/10.1007/978-3-540-79450-9_42
Lamprecht, A.L., Naujokat, S., Margaria, T., Steffen, B.: Semantics-based composition of EMBOSS services. Journal of Biomedical Semantics 2(suppl. 1), S5 (2011), http://www.jbiomedsem.com/content/2/S1/S5
Margaria, T., Kubczak, C., Njoku, M., Steffen, B.: Model-based Design of Distributed Collaborative Bioinformatics Processes in the jABC. In: Proceedings of the 11th IEEE International Conference on Engineering of Complex Computer Systems (ICECCS 2006), pp. 169–176. IEEE Computer Society, Los Alamitos (2006)
Margaria, T., Steffen, B.: Agile IT: Thinking in User-Centric Models. In: Margaria, T., Steffen, B. (eds.) ISoLA 2008. CCIS, vol. 17, pp. 490–502. Springer, Heidelberg (2008)
Margaria, T., Steffen, B.: Continuous Model-Driven Engineering. IEEE Computer 42(10), 106–109 (2009)
Margaria, T., Steffen, B.: Service-Orientation: Conquering Complexity with XMDD. In: Hinchey, M., Coyle, L. (eds.) Conquering Complexity, pp. 217–236. Springer, London (2012), http://dx.doi.org/10.1007/978-1-4471-2297-5_10
Müller-Olm, M., Schmidt, D., Steffen, B.: Model-Checking - A Tutorial Introduction. In: Cortesi, A., Filé, G. (eds.) SAS 1999. LNCS, vol. 1694, pp. 330–354. Springer, Heidelberg (1999), http://dx.doi.org/10.1007/3-540-48294-6_22
Neubauer, J.: Higher-Order Process Engineering. Phd thesis, Technische Universität Dortmund (2014), http://hdl.handle.net/2003/33479
Neubauer, J.: Higher-Order Process Engineering: The Technical Background. Tech. rep., Technische Universität Dortmund (April 2014), http://hdl.handle.net/2003/33102
Neubauer, J., Steffen, B.: Plug-and-Play Higher-Order Process Integration. IEEE Computer 46(11), 56–62 (2013)
Neubauer, J., Steffen, B.: Second-Order Servification. In: Herzwurm, G., Margaria, T. (eds.) ICSOB 2013. LNBIP, vol. 150, pp. 13–25. Springer, Heidelberg (2013), http://dx.doi.org/10.1007/978-3-642-39336-5_2
Neubauer, J., Frohme, M., Steffen, B., Margaria, T.: Prototype-Driven Development of Web Applications with DyWA. In: Margaria, T., Steffen, B. (eds.) ISoLA 2014, Part I. LNCS, vol. 8802, pp. 56–72. Springer, Heidelberg (2014)
Steffen, B., Margaria, T., Nagel, R., Jörges, S., Kubczak, C.: Model-Driven Development with the jABC. In: Bin, E., Ziv, A., Ur, S. (eds.) HVC 2006. LNCS, vol. 4383, pp. 92–108. Springer, Heidelberg (2007), http://dx.doi.org/10.1007/978-3-540-70889-6_7
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2014 Springer-Verlag Berlin Heidelberg
About this paper
Cite this paper
Margaria, T., Floyd, B.D., Gonzalez Camargo, R., Lamprecht, AL., Neubauer, J., Seelaender, M. (2014). Simple Management of High Assurance Data in Long-Lived Interdisciplinary Healthcare Research: A Proposal. In: Margaria, T., Steffen, B. (eds) Leveraging Applications of Formal Methods, Verification and Validation. Specialized Techniques and Applications. ISoLA 2014. Lecture Notes in Computer Science, vol 8803. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-662-45231-8_44
Download citation
DOI: https://doi.org/10.1007/978-3-662-45231-8_44
Publisher Name: Springer, Berlin, Heidelberg
Print ISBN: 978-3-662-45230-1
Online ISBN: 978-3-662-45231-8
eBook Packages: Computer ScienceComputer Science (R0)