---
_id: '11730'
abstract:
- lang: eng
  text: "Abstract\r\nBackground\r\nThe variety of medical documentation often leads
    to incompatible data elements that impede data integration between institutions.
    A common approach to standardize and distribute metadata definitions are ISO/IEC
    11179 norm-compliant metadata repositories with top-down standardization. To the
    best of our knowledge, however, it is not yet common practice to reuse the content
    of publicly accessible metadata repositories for creation of case report forms
    or routine documentation. We suggest an alternative concept called pragmatic metadata
    repository, which enables a community-driven bottom-up approach for agreeing on
    data collection models. A pragmatic metadata repository collects real-world documentation
    and considers frequent metadata definitions as high quality with potential for
    reuse.\r\nMethods\r\nWe implemented a pragmatic metadata repository proof of concept
    application and filled it with medical forms from the Portal of Medical Data Models.
    We applied this prototype in two use cases to demonstrate its capabilities for
    reusing metadata: first, integration into a study editor for the suggestion of
    data elements and, second, metadata synchronization between two institutions.
    Moreover, we evaluated the emergence of bottom-up standards in the prototype and
    two medical data managers assessed their quality for 24 medical concepts.\r\nResults\r\nThe
    resulting prototype contained 466,569 unique metadata definitions. Integration
    into the study editor led to a reuse of 1836 items and item groups. During the
    metadata synchronization, semantic codes of 4608 data elements were transferred.
    Our evaluation revealed that for less complex medical concepts weak bottom-up
    standards could be established. However, more diverse disease-related concepts
    showed no convergence of data elements due to an enormous heterogeneity of metadata.
    The survey showed fair agreement (K<jats:sub>alpha</jats:sub> = 0.50, 95% CI 0.43–0.56)
    for good item quality of bottom-up standards.\r\nConclusions\r\nWe demonstrated
    the feasibility of the pragmatic metadata repository concept for medical documentation.
    Applications of the prototype in two use cases suggest that it facilitates the
    reuse of data elements. Our evaluation showed that bottom-up standardization based
    on a large collection of real-world metadata can yield useful results. The proposed
    concept shall not replace existing top-down approaches, rather it complements
    them by showing what is commonly used in the community to guide other researchers."
article_number: '160'
author:
- first_name: Stefan
  full_name: Hegselmann, Stefan
  last_name: Hegselmann
- first_name: Michael
  full_name: Storck, Michael
  last_name: Storck
- first_name: Sophia
  full_name: Gessner, Sophia
  last_name: Gessner
- first_name: Philipp
  full_name: Neuhaus, Philipp
  last_name: Neuhaus
- first_name: Julian
  full_name: Varghese, Julian
  last_name: Varghese
- first_name: Philipp
  full_name: Bruland, Philipp
  id: '75847'
  last_name: Bruland
  orcid: 0000-0001-6939-7630
- first_name: Alexandra
  full_name: Meidt, Alexandra
  last_name: Meidt
- first_name: Cornelia
  full_name: Mertens, Cornelia
  last_name: Mertens
- first_name: Sarah
  full_name: Riepenhausen, Sarah
  last_name: Riepenhausen
- first_name: Sonja
  full_name: Baier, Sonja
  last_name: Baier
- first_name: Benedikt
  full_name: Stöcker, Benedikt
  last_name: Stöcker
- first_name: Jörg
  full_name: Henke, Jörg
  last_name: Henke
- first_name: Carsten Oliver
  full_name: Schmidt, Carsten Oliver
  last_name: Schmidt
- first_name: Martin
  full_name: Dugas, Martin
  last_name: Dugas
citation:
  ama: 'Hegselmann S, Storck M, Gessner S, et al. Pragmatic MDR: a metadata repository
    with bottom-up standardization of medical metadata through reuse. <i>BMC Medical
    Informatics and Decision Making</i>. 2021;21(1). doi:<a href="https://doi.org/10.1186/s12911-021-01524-8">10.1186/s12911-021-01524-8</a>'
  apa: 'Hegselmann, S., Storck, M., Gessner, S., Neuhaus, P., Varghese, J., Bruland,
    P., Meidt, A., Mertens, C., Riepenhausen, S., Baier, S., Stöcker, B., Henke, J.,
    Schmidt, C. O., &#38; Dugas, M. (2021). Pragmatic MDR: a metadata repository with
    bottom-up standardization of medical metadata through reuse. <i>BMC Medical Informatics
    and Decision Making</i>, <i>21</i>(1), Article 160. <a href="https://doi.org/10.1186/s12911-021-01524-8">https://doi.org/10.1186/s12911-021-01524-8</a>'
  bjps: '<b>Hegselmann S <i>et al.</i></b> (2021) Pragmatic MDR: A Metadata Repository
    with Bottom-up Standardization of Medical Metadata through Reuse. <i>BMC Medical
    Informatics and Decision Making</i> <b>21</b>.'
  chicago: 'Hegselmann, Stefan, Michael Storck, Sophia Gessner, Philipp Neuhaus, Julian
    Varghese, Philipp Bruland, Alexandra Meidt, et al. “Pragmatic MDR: A Metadata
    Repository with Bottom-up Standardization of Medical Metadata through Reuse.”
    <i>BMC Medical Informatics and Decision Making</i> 21, no. 1 (2021). <a href="https://doi.org/10.1186/s12911-021-01524-8">https://doi.org/10.1186/s12911-021-01524-8</a>.'
  chicago-de: 'Hegselmann, Stefan, Michael Storck, Sophia Gessner, Philipp Neuhaus,
    Julian Varghese, Philipp Bruland, Alexandra Meidt, u. a. 2021. Pragmatic MDR:
    a metadata repository with bottom-up standardization of medical metadata through
    reuse. <i>BMC Medical Informatics and Decision Making</i> 21, Nr. 1. doi:<a href="https://doi.org/10.1186/s12911-021-01524-8">10.1186/s12911-021-01524-8</a>,
    .'
  din1505-2-1: '<span style="font-variant:small-caps;"><span style="font-variant:small-caps;">Hegselmann,
    Stefan</span> ; <span style="font-variant:small-caps;">Storck, Michael</span>
    ; <span style="font-variant:small-caps;">Gessner, Sophia</span> ; <span style="font-variant:small-caps;">Neuhaus,
    Philipp</span> ; <span style="font-variant:small-caps;">Varghese, Julian</span>
    ; <span style="font-variant:small-caps;">Bruland, Philipp</span> ; <span style="font-variant:small-caps;">Meidt,
    Alexandra</span> ; <span style="font-variant:small-caps;">Mertens, Cornelia</span>
    ; u. a.</span>: Pragmatic MDR: a metadata repository with bottom-up standardization
    of medical metadata through reuse. In: <i>BMC Medical Informatics and Decision
    Making</i> Bd. 21. London, Springer Science and Business Media LLC (2021), Nr. 1'
  havard: 'S. Hegselmann, M. Storck, S. Gessner, P. Neuhaus, J. Varghese, P. Bruland,
    A. Meidt, C. Mertens, S. Riepenhausen, S. Baier, B. Stöcker, J. Henke, C.O. Schmidt,
    M. Dugas, Pragmatic MDR: a metadata repository with bottom-up standardization
    of medical metadata through reuse, BMC Medical Informatics and Decision Making.
    21 (2021).'
  ieee: 'S. Hegselmann <i>et al.</i>, “Pragmatic MDR: a metadata repository with bottom-up
    standardization of medical metadata through reuse,” <i>BMC Medical Informatics
    and Decision Making</i>, vol. 21, no. 1, Art. no. 160, 2021, doi: <a href="https://doi.org/10.1186/s12911-021-01524-8">10.1186/s12911-021-01524-8</a>.'
  mla: 'Hegselmann, Stefan, et al. “Pragmatic MDR: A Metadata Repository with Bottom-up
    Standardization of Medical Metadata through Reuse.” <i>BMC Medical Informatics
    and Decision Making</i>, vol. 21, no. 1, 160, 2021, <a href="https://doi.org/10.1186/s12911-021-01524-8">https://doi.org/10.1186/s12911-021-01524-8</a>.'
  short: S. Hegselmann, M. Storck, S. Gessner, P. Neuhaus, J. Varghese, P. Bruland,
    A. Meidt, C. Mertens, S. Riepenhausen, S. Baier, B. Stöcker, J. Henke, C.O. Schmidt,
    M. Dugas, BMC Medical Informatics and Decision Making 21 (2021).
  ufg: '<b>Hegselmann, Stefan u. a.</b>: Pragmatic MDR: a metadata repository with
    bottom-up standardization of medical metadata through reuse, in: <i>BMC Medical
    Informatics and Decision Making</i> 21 (2021), H. 1.'
  van: 'Hegselmann S, Storck M, Gessner S, Neuhaus P, Varghese J, Bruland P, et al.
    Pragmatic MDR: a metadata repository with bottom-up standardization of medical
    metadata through reuse. BMC Medical Informatics and Decision Making. 2021;21(1).'
date_created: 2024-07-18T12:06:23Z
date_updated: 2024-07-18T12:51:06Z
department:
- _id: DEP5024
doi: 10.1186/s12911-021-01524-8
external_id:
  pmid:
  - '34001121'
intvolume: '        21'
issue: '1'
language:
- iso: eng
place: London
pmid: '1'
publication: BMC Medical Informatics and Decision Making
publication_identifier:
  eissn:
  - 1472-6947
publication_status: published
publisher: Springer Science and Business Media LLC
status: public
title: 'Pragmatic MDR: a metadata repository with bottom-up standardization of medical
  metadata through reuse'
type: scientific_journal_article
user_id: '83781'
volume: 21
year: '2021'
...
---
_id: '11587'
article_number: '3'
author:
- first_name: Philipp
  full_name: Bruland, Philipp
  id: '75847'
  last_name: Bruland
  orcid: 0000-0001-6939-7630
- first_name: Martin
  full_name: Dugas, Martin
  last_name: Dugas
citation:
  ama: Bruland P, Dugas M. S2O – A software tool for integrating research data from
    general purpose statistic software into electronic data capture systems. <i>BMC
    Medical Informatics and Decision Making</i>. 2017;17(1). doi:<a href="https://doi.org/10.1186/s12911-016-0402-4">10.1186/s12911-016-0402-4</a>
  apa: Bruland, P., &#38; Dugas, M. (2017). S2O – A software tool for integrating
    research data from general purpose statistic software into electronic data capture
    systems. <i>BMC Medical Informatics and Decision Making</i>, <i>17</i>(1), Article
    3. <a href="https://doi.org/10.1186/s12911-016-0402-4">https://doi.org/10.1186/s12911-016-0402-4</a>
  bjps: <b>Bruland P and Dugas M</b> (2017) S2O – A Software Tool for Integrating
    Research Data from General Purpose Statistic Software into Electronic Data Capture
    Systems. <i>BMC Medical Informatics and Decision Making</i> <b>17</b>.
  chicago: Bruland, Philipp, and Martin Dugas. “S2O – A Software Tool for Integrating
    Research Data from General Purpose Statistic Software into Electronic Data Capture
    Systems.” <i>BMC Medical Informatics and Decision Making</i> 17, no. 1 (2017).
    <a href="https://doi.org/10.1186/s12911-016-0402-4">https://doi.org/10.1186/s12911-016-0402-4</a>.
  chicago-de: Bruland, Philipp und Martin Dugas. 2017. S2O – A software tool for integrating
    research data from general purpose statistic software into electronic data capture
    systems. <i>BMC Medical Informatics and Decision Making</i> 17, Nr. 1. doi:<a
    href="https://doi.org/10.1186/s12911-016-0402-4">10.1186/s12911-016-0402-4</a>,
    .
  din1505-2-1: '<span style="font-variant:small-caps;">Bruland, Philipp</span> ; <span
    style="font-variant:small-caps;">Dugas, Martin</span>: S2O – A software tool for
    integrating research data from general purpose statistic software into electronic
    data capture systems. In: <i>BMC Medical Informatics and Decision Making</i> Bd.
    17, Springer Science and Business Media LLC (2017), Nr. 1'
  havard: P. Bruland, M. Dugas, S2O – A software tool for integrating research data
    from general purpose statistic software into electronic data capture systems,
    BMC Medical Informatics and Decision Making. 17 (2017).
  ieee: 'P. Bruland and M. Dugas, “S2O – A software tool for integrating research
    data from general purpose statistic software into electronic data capture systems,”
    <i>BMC Medical Informatics and Decision Making</i>, vol. 17, no. 1, Art. no. 3,
    2017, doi: <a href="https://doi.org/10.1186/s12911-016-0402-4">10.1186/s12911-016-0402-4</a>.'
  mla: Bruland, Philipp, and Martin Dugas. “S2O – A Software Tool for Integrating
    Research Data from General Purpose Statistic Software into Electronic Data Capture
    Systems.” <i>BMC Medical Informatics and Decision Making</i>, vol. 17, no. 1,
    3, 2017, <a href="https://doi.org/10.1186/s12911-016-0402-4">https://doi.org/10.1186/s12911-016-0402-4</a>.
  short: P. Bruland, M. Dugas, BMC Medical Informatics and Decision Making 17 (2017).
  ufg: '<b>Bruland, Philipp/Dugas, Martin</b>: S2O – A software tool for integrating
    research data from general purpose statistic software into electronic data capture
    systems, in: <i>BMC Medical Informatics and Decision Making</i> 17 (2017), H.
    1.'
  van: Bruland P, Dugas M. S2O – A software tool for integrating research data from
    general purpose statistic software into electronic data capture systems. BMC Medical
    Informatics and Decision Making. 2017;17(1).
date_created: 2024-06-24T07:38:31Z
date_updated: 2024-07-17T13:32:32Z
department:
- _id: DEP5024
doi: 10.1186/s12911-016-0402-4
extern: '1'
intvolume: '        17'
issue: '1'
language:
- iso: eng
publication: BMC Medical Informatics and Decision Making
publication_identifier:
  eissn:
  - 1472-6947
publication_status: published
publisher: Springer Science and Business Media LLC
status: public
title: S2O – A software tool for integrating research data from general purpose statistic
  software into electronic data capture systems
type: scientific_journal_article
user_id: '83781'
volume: 17
year: '2017'
...
