Guiding principles for the use of knowledge bases and real-world data in clinical decision support systems : report by an international expert workshop at Karolinska Institutet

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Hoffmann, Mikael and Vander Stichele, Robert and Bates, David W. and Björklund, Johanna and Alexander, Steve and Andersson, Marine L. and Auraaen, Ane and Bennie, Marion and Dahl, Marja Liisa and Eiermann, Birgit and Hackl, Werner and Hammar, Tora and Hjemdahl, Paul and Koch, Sabine and Kunnamo, Ilkka and Le Louët, Herve and Panagiotis, Papapetrou and Rägo, Lembit and Spedding, Michael and Seidling, Hanna M. and Demner-Fushman, Dina and Gustafsson, Lars L. (2020) Guiding principles for the use of knowledge bases and real-world data in clinical decision support systems : report by an international expert workshop at Karolinska Institutet. Expert Review of Clinical Pharmacology, 13 (9). pp. 925-934. ISSN 1751-2441 (https://doi.org/10.1080/17512433.2020.1805314)

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Abstract

Introduction: Technical and logical breakthroughs have provided new opportunities in medicine to use knowledge bases and large-scale clinical data (real-world) at point-of-care as part of a learning healthcare system to diminish the knowledge-practice gap. Areas covered: The article is based on presentations, discussions and recommendations from an international scientific workshop. Value, research needs and funding avenues of knowledge bases and access to real-world data as well as transparency and incorporation of patient perspectives are discussed. Expert opinion: Evidence-based, publicly funded, well-structured and curated knowledge bases are of global importance. They ought to be considered as a public responsibility requiring transparency and handling of conflicts of interest. Information has to be made accessible for clinical decision support systems (CDSS) for healthcare staff and patients. Access to rich and real-world data is essential for a learning health care ecosystem and can be augmented by data on patient-reported outcomes and preferences. This field can progress by the establishment of an international policy group for developing a best practice guideline on the development, maintenance, governance, evaluation principles and financing of open-source knowledge bases and handling of real-world data.

ORCID iDs

Hoffmann, Mikael, Vander Stichele, Robert, Bates, David W., Björklund, Johanna, Alexander, Steve, Andersson, Marine L., Auraaen, Ane, Bennie, Marion ORCID logoORCID: https://orcid.org/0000-0002-4046-629X, Dahl, Marja Liisa, Eiermann, Birgit, Hackl, Werner, Hammar, Tora, Hjemdahl, Paul, Koch, Sabine, Kunnamo, Ilkka, Le Louët, Herve, Panagiotis, Papapetrou, Rägo, Lembit, Spedding, Michael, Seidling, Hanna M., Demner-Fushman, Dina and Gustafsson, Lars L.;
CORE (COnnecting REpositories)