Integrating the Patient Perspective into Healthcare and Real-World Evidence: The Multi-site, Cross-Disease, Patient-Centered Outcomes Research Project in the Medical Informatics Initiative (PCOR-MII)

Abstract This paper presents the Patient-Centered Outcomes Research within the Medical Informatics Initiative (PCOR-MII) project, focusing on the integration of patient-reported outcomes (PROs) into a large-scale national data sharing infrastructure, established in Germany by the Medical Informatics Initiative (MII). PCOR-MII aims to systematically address the interests of various stakeholders in patient-reported health data and three dimensions of clinical utility: (1) prediction, (2) monitoring, and (3) outcome assessment. The project builds upon harmonized technical, data, and compliance environments established at the participating institutions as part of the MII to deploy and roll out software solutions for capturing PROs and making them accessible within local electronic health record (EHR) systems. To overcome interoperability challenges, PCOR-MII is developing a construct-oriented PROM module for the Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR)–based German National Core Dataset. The project applies its approach to three patient populations with distinct characteristics: anorexia nervosa targeting risk prediction (dimension 1), kidney transplantation prioritizing health status and adherence monitoring (dimension 2), and persistent somatic symptoms primarily aimed at assessing and understanding outcomes (dimension 3). With their emphasis on different aspects of PROs, those application areas can serve as blueprints for a broader roll-out. PCOR-MII represents a structured and comprehensive effort to incorporate PROs into a national data infrastructure, promising more precise diagnostics, improved treatment decisions, and the generation of new biomedical insights. We believe that our structured approach may serve as a guiding framework for others aiming to implement PROs in diverse healthcare settings.

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Publication Details

Journal
Journal of Healthcare Informatics Research
Published
2025-01-27
DOI
https://doi.org/10.1007/s41666-025-00187-8
Citations
4
Primary Topic
Digital Mental Health Interventions
Type
article
Field-Weighted Citation Impact
6.18

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article

Integrating the Patient Perspective into Healthcare and Real-World Evidence: The Multi-site, Cross-Disease, Patient-Centered Outcomes Research Project in the Medical Informatics Initiative (PCOR-MII)

Tim Herrmann, Martin Dugas, Steffen Oeltze‐Jafra, Barbara Suwelack et al.
4 citations
Journal of Healthcare Informatics Research
Digital Mental Health Interventions
6.18
article

Integrating the Patient Perspective into Healthcare and Real-World Evidence: The Multi-site, Cross-Disease, Patient-Centered Outcomes Research Project in the Medical Informatics Initiative (PCOR-MII)

Tim Herrmann, Martin Dugas, Steffen Oeltze‐Jafra, Barbara Suwelack, Katrin Elisabeth Giel, Peter Henningsen, Rebecca Mukowski-Kickhöfel, Rüdiger Pryss, Michael Marschollek, Matthias Rose, Peter U. Heuschmann, Martina de Zwaan, Julian Varghese, Fabian Praßer, Frank Ückert, Martin Boeker, M. Zeier, Sylvia Thun, Stephan Zipfel, Andreas Kribben, Oliver Kohlbacher, Michael Storck, Klemens Budde, Lars Pape, Alizé A. Rogge, Thomas Ganslandt, Mario Schiffer, Bernd Löwe, Florian Junne, Yeşim Erim, Hans‐Christoph Friederich, Kai Martin Schmidt-Ott, Felix Nensa, Thomas Debertshäuser
article en
4 citations

Abstract

Abstract This paper presents the Patient-Centered Outcomes Research within the Medical Informatics Initiative (PCOR-MII) project, focusing on the integration of patient-reported outcomes (PROs) into a large-scale national data sharing infrastructure, established in Germany by the Medical Informatics Initiative (MII). PCOR-MII aims to systematically address the interests of various stakeholders in patient-reported health data and three dimensions of clinical utility: (1) prediction, (2) monitoring, and (3) outcome assessment. The project builds upon harmonized technical, data, and compliance environments established at the participating institutions as part of the MII to deploy and roll out software solutions for capturing PROs and making them accessible within local electronic health record (EHR) systems. To overcome interoperability challenges, PCOR-MII is developing a construct-oriented PROM module for the Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR)–based German National Core Dataset. The project applies its approach to three patient populations with distinct characteristics: anorexia nervosa targeting risk prediction (dimension 1), kidney transplantation prioritizing health status and adherence monitoring (dimension 2), and persistent somatic symptoms primarily aimed at assessing and understanding outcomes (dimension 3). With their emphasis on different aspects of PROs, those application areas can serve as blueprints for a broader roll-out. PCOR-MII represents a structured and comprehensive effort to incorporate PROs into a national data infrastructure, promising more precise diagnostics, improved treatment decisions, and the generation of new biomedical insights. We believe that our structured approach may serve as a guiding framework for others aiming to implement PROs in diverse healthcare settings.

Journal of Healthcare Informatics Research
Universität Hamburg (DE), Friedrich-Alexander-Universität Erlangen-Nürnberg (DE), Heidelberg University (DE), University of Münster (DE), University of Würzburg (DE), University Hospital Heidelberg (DE), TUM Klinikum (DE), Medizinische Hochschule Hannover (DE), Humboldt-Universität zu Berlin (DE), Universitätsklinikum Erlangen (DE), University Hospital Münster (DE), University Medical Center Hamburg-Eppendorf (DE), Essen University Hospital (DE), Universitätsklinikum Würzburg (DE), Berlin Institute of Health at Charité - Universitätsmedizin Berlin (DE), German Center for Diabetes Research (DE), Artificial Intelligence in Medicine (Canada) (CA), University of Duisburg-Essen (DE), Charité - Universitätsmedizin Berlin (DE), University of Tübingen (DE), Otto-von-Guericke-Universität Magdeburg (DE)
Bundesministerium für Bildung und Forschung, Charité – Universitätsmedizin Berlin
Openalex Percentile: Top 4%
Digital Mental Health Interventions
6.18
DOIOpen Access PDFOpenAlex
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