Published on in Vol 23, No 6 (2021): June

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/26631, first published .
Secondary Use of Clinical Data in Data-Gathering, Non-Interventional Research or Learning Activities: Definition, Types, and a Framework for Risk Assessment

Secondary Use of Clinical Data in Data-Gathering, Non-Interventional Research or Learning Activities: Definition, Types, and a Framework for Risk Assessment

Secondary Use of Clinical Data in Data-Gathering, Non-Interventional Research or Learning Activities: Definition, Types, and a Framework for Risk Assessment

Journals

  1. Köngeter A, Schickhardt C, Jungkunz M, Bergbold S, Mehlis K, Winkler E. Patients’ Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer. Journal of Medical Internet Research 2022;24(8):e37665 View
  2. Gothe H, Ihle P, Swart E. Was verstehen wir unter Sekundärdaten? – Ein Grundsatzbeitrag zur terminologischen Einordnung und Definition. Das Gesundheitswesen 2021;83(S 02):S64 View
  3. Jungkunz M, Köngeter A, Mehlis K, Spitz M, Winkler E, Schickhardt C. Haben Patient*innen die moralische Pflicht, ihre klinischen Daten für Forschung bereitzustellen? Eine kritische Prüfung möglicher Gründe. Ethik in der Medizin 2022;34(2):195 View
  4. Frid S, Pastor Duran X, Bracons Cucó G, Pedrera-Jiménez M, Serrano-Balazote P, Muñoz Carrero A, Lozano-Rubí R. An Ontology-Based Approach for Consolidating Patient Data Standardized With European Norm/International Organization for Standardization 13606 (EN/ISO 13606) Into Joint Observational Medical Outcomes Partnership (OMOP) Repositories: Description of a Methodology. JMIR Medical Informatics 2023;11:e44547 View
  5. Bello C, Nuebling M, Koster K, Heidegger T. Patient-reported perioperative anaesthesia-related anxiety is associated with impaired patient satisfaction: a secondary analysis from a prospective observational study in Switzerland. Scientific Reports 2023;13(1) View
  6. Winkler E, Jungkunz M, Thorogood A, Lotz V, Schickhardt C. Patient data for commercial companies? An ethical framework for sharing patients’ data with for-profit companies for research. Journal of Medical Ethics 2023:jme-2022-108781 View
  7. Stenzinger A, Moltzen E, Winkler E, Molnar‐Gabor F, Malek N, Costescu A, Jensen B, Nowak F, Pinto C, Ottersen O, Schirmacher P, Nordborg J, Seufferlein T, Fröhling S, Edsjö A, Garcia‐Foncillas J, Normanno N, Lundgren B, Friedman M, Bolanos N, Tatton‐Brown K, Hill S, Rosenquist R. Implementation of precision medicine in healthcare—A European perspective. Journal of Internal Medicine 2023;294(4):437 View
  8. Schickhardt C, Mehlis K, Winkler E, Jungkunz M. Zur Ethik der Forschungsnutzung von Patientendaten. Die Onkologie 2024;30(1):25 View
  9. Drechsler J, Pauly H. Das Reidentifikationspotenzial von strukturierten Gesundheitsdaten. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz 2024;67(2):164 View
  10. Köngeter A, Schickhardt C, Jungkunz M, Mehlis K, Winkler E, Strumann C. Physicians’ attitudes towards secondary use of clinical data for biomedical research purposes in Germany. Results of a quantitative survey. PLOS ONE 2024;19(2):e0274032 View
  11. Jungkunz M, Winkler E, Schickhardt C. Haben Krankenhäuser die Pflicht, die sekundäre Forschungsnutzung von Behandlungsdaten zu unterstützen?. Ethik in der Medizin 2024;36(4):507 View

Books/Policy Documents

  1. Jungkunz M, Köngeter A, Winkler E, Mehlis K, Schickhardt C. Datenreiche Medizin und das Problem der Einwilligung. View
  2. Thorogood A, Chokoshvili D. Handbook of Bioethical Decisions. Volume I. View
  3. Payne P. Clinical Research Informatics. View
  4. Avasthi S, Chauhan R. Computational Intelligence in Healthcare Informatics. View