An EMR based cancer diary

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An EMR based cancer diary Utilization and initial usability evaluation of a new cancer data visualization tool Markus Ries, PD Dr. T. Bürkle Prof. Dr. H.U. Prokosch, CCC Erlangen-Nuremberg Chair of Medical Informatics, University of Erlangen-Nuremberg CIO University Hospital Erlangen FRIEDRICH-ALEXANDER UNIVERSITÄT ERLANGEN-NÜRNBERG MEDIZINISCHE FAKULTÄT

Page 2 Tumor documentation at CCC Erlangen Nuremberg n Cancer care is provided trans-sectoral and interdisciplinary n Tumor documentation is an essential part of cancer care enables professional case management provides patient individual therapy guarantees sustainable treatment success n an increasing proportion of data is recorded digitally n Integration of data from numerous dept. systems n Reuse of data n Single Source Concept n extensive amount of data n distributed across long care periods n Important events are often hidden in an information overload

Page 3 The Setting CCC Erlangen Nuremberg n Comprehensive Cancer Center Erlangen Nürnberg (CCC-EN) n IT-infrastructure for cancer care and cancer research* pathology surgery RIS medication radiooncology Challenge: EMR system Cancer Registry Research Databases n Within the electronic medical record (EMR) a tool is required to provide most important data at one glance enable a fast overview of long-term cases * Prokosch H, Ries M, Beyer A, Schwenk M, Seggewies C, Köpcke F et al. IT Infrastructure Components to Support Clinical Care and Translational Research Projects in a Comprehensive Cancer Center. Stud Health Technol Inform 2011; 169:892 6.

Research Question Development of the Cancer diary Page 4? Which information and what data granularity are required?? Workshop with medical staff General requirements n real time data access n directly at point of care n print functionality Required data and granularity n intense discussion => requirements still in flow Technical approach n implementation in hospital wide EMR (Soarian) n SQL Stored Procedure n Crystal Report for presentation n Pilot: general surgery n 6 months evolutionary prototyping n hospital wide roll out

Page 5 The Cancer diary Succes or not? Will the cancer diary be used for direct patient care??? Methods: Does the cancer diary facilitate information retrieval? n Log file analysis n Evaluation of user satisfaction 8 months post introduction abbreviated QUIS (Questionnaire for User Interaction Satisfaction)* cancer diary specific questions and free-text comments answer options on a five point Likert scale distributed to 15 most frequent cancer diary users * Ohmann C, Boy O, Yang Q. A systematic approach to the assessment of user satisfaction with health care systems: constructs, models and instruments. Stud Health Technol Inform 1997; 43 Pt B:781 5.

IT Infrastructure Components in a Comprehensive Cancer Center :: Results The cancer diary: components and sources Header n patient identifying data n key tumor data: tumor entity, date of primary diagnosis, Body n cancer documentation (melanoma, prostate, kidney) n pathology reports Diagnostics n surgery documentation Therapy n therapeutic nuclear medicine and radiology [EMR] n nuclear medicine and radiology reports [RIS] n digital tumor conference decision [EMR] n radiotherapy and systemic chemotherapy are not yet documented digitally => surrogate: ICPM procedures concrete example of the cancer diary n Option for manual extensions Page 6 [pathology IT system] [surgery IT system] [RIS] [ADT/Billing System] [EMR]

Page 7 Test patient header surgery report thyroid scintigraphy Most recent data body tumor conference decision CT findings ordered chronological date parsed information to provide summarized overview Old data

Page 8 Option for manual extensions (follow up) 1 2 Test patient Ereignis für Tumortagebuch Ereignis Datum: Ereignis Art: 28.12.2011 Nachsorge Ereignis: Thorax-CT unauffällig Nachsorge n easy option to integrate additional data in the EMR and cancer diary n e.g. external follow-up examination

Page 9 Option for manual extensions 3 Test patient 2 Ereignis für Tumortagebuch Ereignis Datum: Ereignis Art: 28.12.2011 Nachsorge 28.12.2011 Nachsorge Manuelle Eingabe Thorax-CT unauffällig Ereignis: Thorax-CT unauffällig Nachsorge n External follow-up examination n Easy option to integrate data in EMR and cancer diary

Page 10 Results Logfiles and system use n Between 120 and 140 requests per month n Increasing number of different user (dotted line) 160 request per months 140 120 100 80 60 40 20 0 2011 7 1 13 17 1 9 8 7 12 38 15 28 21 16 29 52 11 7 2 20 20 28 21 73 97 24 51 41 63 68 36 32 31 20 25 40 22 23 19 11 12 19 23 23 May Jun Jul Aug Sep Oct Nov Dec cancer registry surgery OMF surgery pediatrics ENT surgery others diff. User per month

Page 11 Results User satisfaction questionnaire n Return rate: 73 % (eleven out of fifteen questionnaires) n values above 3 are positive (max = 5) n Overall user opinion was highly positive with a median of 4,38 Legend 1. cancer diary provides better information than paper record 2. cancer diary provides better information than electronic record 3. cancer diary facilitates case- management 4. cancer diary shortens OPD preparation time 5. cancer diary supports audit & certification QUIS: overall user satisfaction min 1st quartil 0 1 2 3 4 5 median 3th quartil max 4,38

Page 12 Discussion n Roll out in 12 departments => frequent use in 5 departments Additional training for the remaining departments Reevaluation in 2013 n 15 frequent user => small group for evaluation Reevaluation in 2013 n Evaluation shows high overall user satisfaction n User citation: the cancer diary presents information better than the paper chart and the complete EMR Tools like the cancer diary are essential to motivate medical staff for electronic data gathering

Take Home Message What can other institutions learn from this? n create an EMR with comprehensive cancer documentation and integration of clinical data from dept. subsystems n thus make digitally available basic patient data cancer specific data staging data therapy information n create dynamic and customized reports n provide the option to add e.g. follow-up examination data Quick overview is essential => Summarize key facts Page 13 Probably not all data is available digitally => Work arounds (here: visit in a centralized chemotherapy opd)

IT Infrastructure Components in a Comprehensive Cancer Center :: Thank you very much for your attention! Any questions? Seite 14 Contact Prof. Dr. Hans-Ulrich Prokosch University Erlangen-Nuremberg - Chair of Medical Informatics CIO University Hospital Erlangen Krankenhausstraße 12 91054 Erlangen Tel: +49 9131 85-26720 email: ulli.prokosch@imi.med.uni-erlangen.de References Neubauer A, Wolf M, Engenhart-Cabillic R, Rothmund M. Funktion und Aufgabe eines interdisziplinären Tumorzentrums: Function and task of an interdsciplinary tumour center. Dtsch med Wochenschr 2002; 127(17):901 6. Zünkeler M, Schlag PM. Regionale Verbünde in der Onkologie. Der Onkologe 2009; 15(11):1070 81. Parkin DM. The evolution of the population-based cancer registry. Nat. Rev. Cancer 2006; 6(8):603 12. Prokosch H, Ries M, Beyer A, Schwenk M, Seggewies C, Köpcke F et al. IT Infrastructure Components to Support Clinical Care and Translational Research Projects in a Comprehensive Cancer Center. Stud Health Technol Inform 2011; 169:892 6. Ohmann C, Boy O, Yang Q. A systematic approach to the assessment of user satisfaction with health care systems: constructs, models and instruments. Stud Health Technol Inform 1997; 43 Pt B:781 5. Bray F, Parkin DM. Evaluation of data quality in the cancer registry: Principles and methods. Part I: Comparability, validity and timeliness. European Journal of Cancer 2009; 45(5):747 55. Altmann U, Katz FR, Dudeck J. A reference model for clinical tumour documentation. Studies in health technology and informatics 2006; 124:139 44. Fenstermacher D, Street C, McSherry T, Nayak V, Overby C, Feldman M. The Cancer Biomedical Informatics Grid (cabig). Conf Proc IEEE Eng Med Biol Soc 2005; 1:743 6. Califano A, Chinnaiyan A, Duyk GM, Gambhir SS, Hubbard T, Lipman DJ et al. An assessment of the impact of the NIC cancer biomedical informatics grid (cabig): Report of the Board of Scientific Advisors Ad Hoc Working Group; 2011 Mar 1.

Page 15 Future work Future extensions of the cancer diary are evaluated n Integrate data of external cancer registry (follow-up information) n Decisions support system Real time comparison of tumor conference decisions ó patient diagnostics and therapy => Case management => Compliance to medical guidelines

IT Infrastructure Components in a Comprehensive Cancer Center :: Seite 16 s thyroid Test patient tumorconfer

IT Infrastructure Components in a Comprehensive Cancer Center :: Seite 17 Ereignis für Tumortagebuch Ereignis Datum: 28.12.2011 Ereignis Art: Ereignis: Nachsorge Thorax-CT unauffällig Nachsorge