Methodological Challenges when Using Routinely Collected Health Data for Research: A scoping review.
Routinely collected health data (RCD) including electronic health records, disease registries, health administrative data and wearables data are not specifically collected for research purposes. Analysis of these data poses unique methodological challenges that must be addressed when conducting research, particularly as availability and use increase. This scoping review aimed to identify methodological challenges in research using RCD from existing literature (registered protocol: https://doi.org/10.17605/OSF.IO/EBM4D). We searched 6 electronic databases, including medical, health economics, nursing and psychology research databases, between Jan 2015 and Jan 2023, combining multiple “RCD” and “research” search terms (e.g., epidemiologic, informatics, pharmaceutical research). After screening abstracts and full-texts, we doubly extracted methodological themes, categorizing them into different study stages. We screened more than 23,000 records and included 430 papers. Bias and confounding were the most common methodological issues identified, discussed in relation to both study design and data analysis. Data quality, including data accuracy, validation, completeness, timeliness and cleaning, also posed substantial challenges, particularly during data processing stage. Record linkage and conducting analyses using distributed health networks also pose unique methodological challenges. Heterogeneity, incorporating social determinants of health and statistical models that address methodological challenges are also described in the literature. External validity and reporting are important considerations for RCD research. Our review identified several methodological challenges facing researchers using RCD. These issues should be addressed to ensure methodologically sound research. These findings will inform the development of a standardized protocol template and accompanying educational platform aimed at enhancing methodological quality and transparency when conducting research using RCD.
Authors
- Sinéad Langan (ORCID: https://orcid.org/0000-0002-7022-7441)
- Katie Harron (ORCID: https://orcid.org/0000-0002-3418-2856)
- Scott D. Emerson (ORCID: https://orcid.org/0000-0001-8055-3542)
- Astrid Guttmann (ORCID: https://orcid.org/0000-0001-8177-2253)
- James Im (ORCID: https://orcid.org/0000-0002-9718-0284)
- Taylor McLinden (ORCID: https://orcid.org/0000-0001-7425-2719)
- M Ellen Kuenzig (ORCID: https://orcid.org/0000-0002-3984-8426)
- Henrik Toft Sørensen (ORCID: https://orcid.org/0000-0003-4299-7040)
- Sigrún Alba Jóhannesdóttir Schmidt (ORCID: https://orcid.org/0000-0001-5527-0698)
- Shirley Wang (ORCID: https://orcid.org/0000-0001-7761-7090)
- Eric I. Benchimol (ORCID: https://orcid.org/0000-0001-8855-3598)
- Richard Shaw (ORCID: https://orcid.org/0000-0002-7906-6066)
- Lili Wei (ORCID: https://orcid.org/0000-0002-3255-3449)
- David McAllister (ORCID: https://orcid.org/0000-0003-3550-1764)
- An‐Wen Chan (ORCID: https://orcid.org/0000-0002-4498-3382)
- Jerry M Maniate (ORCID: https://orcid.org/0000-0002-2112-4147)
- David Moher (ORCID: https://orcid.org/0000-0003-2434-4206)
- Lars G. Hemkens (ORCID: https://orcid.org/0000-0002-3444-1432)
- William G Dixon
- Véra Ehrenstein (ORCID: https://orcid.org/0000-0002-3415-3254)
- Ronan A Lyons (ORCID: https://orcid.org/0000-0001-5225-000X)
- Irene Petersen (ORCID: https://orcid.org/0000-0002-0037-7524)
- Hude Quan (ORCID: https://orcid.org/0000-0002-7848-7256)
- Henry Halder
- Yan Zheng
- Asbjørn Hróbjartsson (ORCID: https://orcid.org/0000-0002-2451-5012)
- Azza Eissa
- Shannon E. MacDonald
Institutions
- Alberta Health Services (CA)
- University of Ottawa (CA)
- University of Alberta (CA)
- Tel Aviv University (IL)
- University of Calgary (CA)
- Simon Fraser University (CA)
- University of Toronto (CA)
- Aarhus University (DK)
- Hospital for Sick Children (CA)
- Odense University Hospital (DK)
- Harvard University Press (US)
- Aarhus University Hospital (DK)
- University of Manchester (GB)
- Swansea University (GB)
- London School of Hygiene & Tropical Medicine (GB)
- Hospital Base (CL)
- AIDS Vancouver (CA)
- University College London (GB)
- University of Glasgow (GB)
- University of Health Sciences Antigua (AG)
Publication Details
- Journal
- International Journal for Population Data Science
- Published
- 2024-09-10
- DOI
- https://doi.org/10.23889/ijpds.v9i5.2610
- Citations
- 2
- Primary Topic
- Health disparities and outcomes
- Type
- article
- Field-Weighted Citation Impact
- 1.06
Funders
- Economic and Social Research Council