Follow the data: tracking data quality and completeness in oncology real-world data
Year: 2026
Type: article
Abstract: Objectives: Electronic Health Record (EHR) data are increasingly used in cancer research, yet the fidelity of this data when exchanged between systems remains poorly quantified. This study investigated the agreement in essential biomarker data after they are passed from the EHR into the cancer registry and Fast Healthcare Interoperability Resources (FHIR) extracts. Materials and Methods: This single-institution retrospective study compared demographics and 6 biomarkers from 30 lung cancer patients seen between July 2020 and July 2022. Manual review from the EHR served as the gold standard, with concordance tested between the source EHR, Institutional Cancer Registry, and FHIR exports. Results: Demographics showed high concordance across databases. In contrast, biomarker data present in the source EHR were missing in 80%-100% of FHIR extracts. The demographic registry variables were highly concordant. Discussion: This study reports a significant loss in biomarker data availability across real-world data (RWD) sources. Results underscore critical gaps in RWD extraction or exchange methods and highlight risks of relying on RWD without validation.
Source: JAMIA Open
Institutions: University of North Carolina at Chapel Hill, Frederick National Laboratory for Cancer Research, National Cancer Institute, Leidos Biomedical Research Inc. (United States), Atrium Health Wake Forest Baptist, University of South Dakota, The University of Texas Southwestern Medical Center
Language: English
Subfield: Health Information Management
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,762
Funders: Consejería de Universidad, Investigación e Innovación, Junta de Andalucía, National Aeronautics and Space Administration, Earthwatch Institute, Amgen, World Bank Group, Ohio State University, Japan Agency for Medical Research and Development, Nottingham Trent University, University of Manitoba, Environment Agency, Sir John Fisher Foundation, UK Research and Innovation, Amarin Corporation, Tromsø Forskningsstiftelse, Cycle for Survival, Dutch Cardiovascular Alliance, Geoffrey Beene Foundation, European Commission, National Research Foundation, Deutsche Forschungsgemeinschaft, Danmarks Grundforskningsfond, United States-Israel Binational Science Foundation, University of Queensland, Fundação de Amparo à Pesquisa do Estado de São Paulo, National Natural Science Foundation of China, Chinese Academy of Sciences, Austrian Science Fund, Seoul National University, Fundación Científica Asociación Española Contra el Cáncer, Generalitat de Catalunya, China Postdoctoral Science Foundation, Nederlandse Organisatie voor Wetenschappelijk Onderzoek, Generalitat Valenciana, Natural Science Foundation of Guangdong Province, Korea Health Industry Development Institute, National Research Foundation of Korea, Hjärt-Lungfonden, King Fahd University of Petroleum and Minerals, Shiraz University of Medical Sciences, Seoul National University Hospital, Vetenskapsrådet, Universiteit Gent, China Scholarship Council, Innovative Team of Jiangsu Province, Norges Forskningsråd, State Administration of Traditional Chinese Medicine of the People's Republic of China, Natural Science Foundation of Shandong Province, National Forestry and Grassland Administration, Qingdao University of Science and Technology, Shenzhen University, Interdisziplinäres Zentrum für Klinische Forschung, Universitätsklinikum Würzburg, Novo Nordisk Fonden, Qinghai Provincial Department of Science and Technology, Business Finland, Seoul Metropolitan Government Seoul National University Boramae Medical Center, Science and Technology Department of Tibet, LUPUS UK, Jazz Pharmaceuticals Canada, CRIS Cancer Foundation, National Institutes of Health, U.S. Food and Drug Administration, Directorate for Engineering, Horizon 2020 Framework Programme, Center for Innovations in Quality, Effectiveness and Safety, Canadian Institutes of Health Research, Central Council for Research in Homeopathy, Ministry of AYUSH, Government of India, Engineering and Physical Sciences Research Council, Natural Environment Research Council, Fundação para a Ciência e a Tecnologia, Centro de Investigación Científica y de Educación Superior de Ensenada, Baja California, Chinese Universities Scientific Fund, Yonsei University College of Medicine, European Regional Development Fund, Xinjiang Institute of Ecology and Geography, Chinese Academy of Sciences, Institute of Chemistry, Chinese Academy of Sciences, National Key Research and Development Program of China, Fundamental Research Funds for the Central Universities, Norwegian Institute of Public Health, Sino-Africa Joint Research Center, Chinese Academy of Sciences, Office of Naval Research, National Institute of Mental Health, National Institute on Drug Abuse, National Cancer Institute, Fogarty International Center, National Institute of Biomedical Imaging and Bioengineering, Bioenergy Technologies Office, Los Alamos National Laboratory, NHLBI Division of Intramural Research, HORIZON EUROPE European Research Council, World Scleroderma Foundation, Advanced Materials and Manufacturing Technologies Office, NextGenerationEU, Key Research and Development Program of Zhejiang Province
OpenAlex ID: W7160418548