International Journal of Medical Informatics
Volume 75, Issue 3 , Pages 191-200 , March 2006

Towards shared patient records: An architecture for using routine data for nationwide research

  • Petra Knaup

      Affiliations

    • University of Heidelberg, Department of Medical Informatics, Im Neuenheimer Feld 400, D-69120 Heidelberg, Germany
    • Corresponding Author InformationCorresponding author. Tel.: +49 6221 567398.
  • ,
  • Sebastian Garde

      Affiliations

    • Central Queensland University, Faculty of Informatics and Communication, Rockhampton, Qld. 4702, Australia
  • ,
  • Angela Merzweiler

      Affiliations

    • SRH Learnlife AG, Lempenseite 55, D-69168 Wiesloch, Germany
  • ,
  • Norbert Graf

      Affiliations

    • University Hospital of the Saarland, Pediatric Hematology and Oncology, Homburg, Germany
  • ,
  • Freimut Schilling

      Affiliations

    • Olgahospital Stuttgart, Pediatrics 5 (Oncology, Hematology, and Immunology), Bismarckstr. 8, D-70176 Stuttgart, Germany
  • ,
  • Ralf Weber

      Affiliations

    • University of Heidelberg, Coordination Center for Clinical Trials, Im Neuenheimer Feld 221, D-69120 Heidelberg, Germany
  • ,
  • Reinhold Haux

      Affiliations

    • Technical University of Braunschweig, Institute for Medical Informatics, Mühlenpfordtstraße 23, D-38106 Braunschweig, Germany

References 

  1. Harris MF, Priddin D, Ruscoe W, Infante FA, O’Toole BI. Quality of care provided by general practitioners using or not using division-based diabetes registers. Med. J. Aust. 2002;177:250–252
  2. Celler BG, Lovell NH, Basilakis J. Using information technology to improve the management of chronic disease. Med. J. Aust. 2003;179:242–246
  3. R. Thomson, DILEMMA decision support in primary care, oncology and shared care, in: M.F. Laires, et al. (Eds.), Health in the New Communications Age, IOS Press, Amsterdam, 1995, pp. 208–217.
  4. Guler I, Muldur S. A model approach to sharing electronic medical records between and within the state hospitals in Turkey. Comput. Biol. Med. 2001;31:513–523
  5. van der Haak M, Mludek V, Wolff AC, Bülzebruck H, Oetzel D, Zierhut D, et al. Networking in shared care—first steps towards a shared electronic patient record for cancer patients. Meth. Inform. Med. 2002;41:419–425
  6. Leiner F, Haux R. Systematic planning of clinical documentations. Meth. Inform. Med. 1996;35:25–34
  7. Blobel B. Authorisation and access control for electronic health record systems. Int. J. Med. Inform. 2004;73:251–257
  8. Henze G, Creutzig U, Herold R. The medical research network pediatric oncology and hematology. Onkologie. 2001;24:169
  9. P. Kaatsch, U. Kaletsch, C. Spix, J. Michaelis, Jahresbericht/Annual Report 1998, German Childhood Cancer Registry, Institute for Medical Statistics and Documentation, 1999.
  10. Knaup P, Ellsässer K-H, Hartung S, Haux R, Wiedemann T. Introduction of two examples for the systematic planning of clinical tumor documentations. In:  Victor N,  Blettner M,  Edler L, et al. editor. Medical Informatics, Biostatistics and Epidemiology für Efficient Health Care and Medical Research. Contributions from the 44th Annual Conference of the GMDS. München: MMV; 1999;p. 303–307
  11. Sauter S, Kaatsch P, Creutzig U, Michaelis J. Definition of a common data set for clinical trials in pediatric oncology. Klin. Pädiatr. 1994;206:302–312(in German)
  12. Merzweiler A, Knaup P, Creutzig U, Ehlerding H, Haux R, Mludek V, et al. Requirements and design aspects of a data model for a data dictionary in paediatric oncology. In:  Hasman A,  Blobel B,  Dudeck J, et al. editor. Proceedings of the Medical Infobahn Europe (MIE2000) and GMDS2000. Amsterdam: IOS; 2000;p. 696–700
  13. Weber R, Knaup P, Knietig R, Haux R, Merzweiler A, Mludek V, et al. Object-oriented business process analysis of the cooperative soft tissue sarcoma trial of the German Society for Pediatric Oncology and Haematology (GPOH). Medinfo. 2001;10(Pt 1):58–62
  14. Garde S, Baumgarten B, Basu O, Graf N, Haux R, Herold R, et al. A meta-model of chemotherapy planning in the multi-hospital/multi-trial-center-environment of pediatric oncology. Meth. Inform. Med. 2004;43:171–183
  15. Garde S, Knaup P, Herold R. Qumquad: a UML-based approach for remodeling of legacy systems in health care. Int. J. Med. Inform. 2003;70:183–194
  16. Merzweiler A, Knaup P, Weber R, Ehlerding H, Haux R, Wiedemann T. Recording clinical data—from a general set of record items to case report forms (crf) for clinics. In:  Patel V,  Rogers R,  Haux R editor. Proceedings of the 10th World Congress on Medical Informatics (MEDINFO 2001). Amsterdam: IOS Press; 2001;p. 653–657
  17. Knaup P, Wiedemann T, Bachert A, Creutzig U, Haux R, Schilling F. Efficiency and safety of chemotherapy plans for children. CATIPO—a nationwide approach. Artif. Intell. Med. 2002;24:229–242
  18. Müller ML, Ganslandt T, Eich HP, Lang K, Ohmann C, Prokosch HU. Towards integration of clinical decision support in commercial hospital information systems using distributed, reusable software and knowledge components. Int. J. Med. Inform. 2001;64:369–377
  19. Clayton PD, Narus SP, Huff SM, Pryor TA, Haug PJ, Larkin T, et al. Building a comprehensive clinical information system from components. The approach at intermountain health care. Meth. Inform. Med. 2003;42:1–7
  20. Xu Y, Sauquet D, Degoulet P, Jaulent M. Component-based mediation services for the integration of medical applications. Artif. Intell. Med. 2003;27:283–304
  21. Brown B. Coming to terms with datasets for diabetes care. Diab. Nutr. Metab. 2000;13:215–219
  22. Cimino JJ. Terminology tools: state of the art and practical lessons. Meth. Inform. Med. 2001;
  23. Rector AL. Terminology and concept representation languages: where are we?. Artif. Intell. Med. 1999;15:1–4
  24. Knaup P, Mludek V, Wiedemann T, Bauer J, Haux R, Kim L, et al. Integrating specialized application systems into hospital information systems—obstacles and factors for success. In:  Hasman A,  Blobel B,  Dudeck J, et al. editor. Proceedings of the Medical Infobahn Europe (MIE2000) and GMDS2000. Amsterdam: IOS; 2000;p. 890–894
  25. Bürkle T, Schweiger R, Altmann U, Holena M, Blobel B, Dudeck J. Transferring data from one EPR to another: content–syntax–semantic. In:  Moorman PW,  van der Lei J,  Musen MA editor. Proceedings of the IMIA Working Group 17, The International Working Conference on Electronic Patient Records in Medical Practice (EPRIMP). 1998;p. 326–329ISBN 90-9012128-5
  26. Blobel B, Roger-France F. A systematic approach for analysis and design of secure health information systems. Int. J. Med. Inform. 2001;62:51–78
  27. Brandner R, Pordesch U. Long-term Conservation of Provability of Electronically Signed Documents. Paris: Information Security Solutions Europe (ISSE); 2002;
  28. Bess A, Brandner R. Deduction of principles on long-term conservation of electronically signed documents by multi professional analyses. In: The New Navigators: From Professionals to Patients, Proceedings of the Medical Informatics Europe (MIE 2003). 4–7 May, St. Malo. 2003;
  29. Rector AL, Solomon WD, Nowlan WA, Rush TW, Zanstra PE, Claassen W. A terminology server for medical language and medical information systems. Meth. Inform. Med. 1995;34:147–157
  30. Rossi Mori A, Consorti F, Galeazzi E. Standards to support development of terminological systems for healthcare telematics. Meth. Inform. Med. 1998;37:551–563
  31. P. Ramsaroop, M.J. Ball, A Model for More Useful Patient Health Records, MD Computing, 2000, pp. 45–48.
  32. De Clercq E. The index as a new concept towards an integrated framework for the electronic patient record. Meth. Inform. Med. 2002;41:313–320
  33. Tange HJ, Dietz JL, Hasman A, de Vries Robbe P. A generic model of clinical practice. Meth. Inform. Med. 2003;42:203–211

PII: S1386-5056(05)00129-2

doi: 10.1016/j.ijmedinf.2005.07.020

International Journal of Medical Informatics
Volume 75, Issue 3 , Pages 191-200 , March 2006