Have you ever wondered just how health data from people’s clinic visits are anonymized and transformed into insights that can improve health outcomes? Each step in the process, from collecting the data to removing personally identifying information and ensuring quality, is critical to the ultimate outcome: a clean, representative dataset that can be queried by researchers to better understand real-world experiences across the U.S. with no traceability back to the original records.
Through a clever analogy to the chocolate-making process, a resource on the PCORnet website helps patients better understand how data from their electronic health records, or EHRs, are made safe and secure for research use via PCORnet. This resource, which begins with cacao seeds (representing individual health records) and ends in delicious, ready-to-eat chocolate (research-ready datasets for query) was created by PaTH, a PCORnet® Clinical Research Network. Its step-by-step illustration of the journey fosters greater understanding of the often-confusing process of data transformation, a critical undertaking before researchers can leverage data from everyday healthcare encounters to answer important questions about health outcomes.
The PCORnet website has a treasure trove of resources, like this guide, to educate investigators, patients, and policymakers and improve research through evidence-based practices. Check it out today! Interested in the EHR data journey, but short on time? Watch this brief video explainer illustrating the process in under five minutes. Don’t let this sweet learning opportunity pass you by!