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by nradov
710 days ago
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Many healthcare providers now have APIs for patients to download their data in standard HL7 FHIR and/or CDA format. You should ask about this, and if they don't have it then consider switching providers. All modern EHRs have that functionality built in so for providers it's simply a matter of switching it on. However, most of that data is useless for research purposes. Even if the format complies with industry standards the quality is often bad with many data elements lacking consistent coding. You can't just feed clinical data from a bunch of different random sources into a research project and expect to get accurate results: it's a garbage in / garbage out issue. That's why most clinical research studies involve just a few provider organizations so that the researchers can properly configure the systems and train the clinicians on consistent data entry. |
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