Two Roads Diverged in a Yellow Database…
Julie Ferris - May 2, 2024
For the past 15 years, my career has revolved around de-identified patient data. Every single day, for 15 years, I have been either evaluating new sources of data, building ETL ingestion processes, data models, and architecture, writing code for a product or custom or predictive analytics, reviewing outputs for insight, scoping solutions for clients, or mentoring colleagues or my team, all with de-identified patient data. It’s a job, hobby, and passion.
De-identified patient data has now evolved to what is known as “Real World Data” aka “RWD”, because holy hell, this healthcare data industry loves its acronyms and buzzwords.
For the most part, the RWD industry looks a lot different than it did 15 years ago. There are a lot more companies selling their data or amassing assets now (all with the best data in the market of course), there are data brokers, tons of platforms for analytics, and even more consultancies to extract insight from it. The industry isn’t as hidden; what was once a “nuisance” secondary business of data collection is now at the forefront. We’re in the Era of Big Data, and healthcare data is the pinnacle of that era, with endless possibilities in front of us, especially with AI/ML.
But I did say “most”. In some aspects of the healthcare data industry, some things haven’t changed at all. In particular, the Privacy and Compliance components of de-identified patient data remain in their cavemen era. It is a rather appropriate description, as so much of understanding the intricacies of de-identification remains very much in the dark. Most people who even work in the industry can barely explain it, let alone how it works, save for Safe Harbor, which is a great option for when you want to get rid of all the data points that are valuable and actually matter. But when you don’t give up all those data points, you have the option of the black box and subjectivity.
It seems like a significant problem and certainly the foundation of a future Netflix Documentary; an industry growing at a rapid rate with highly sensitive, regulated data assets, but technology to preserve privacy and safeguard data and the patients in it, lagging so far behind.
And with that mission in mind, we officially bring Spindle Health into the market. My brilliant co-founder, big data engineer, and eternal optimist, Eddie Pantridge, and my other partner, mentor, and far too humble industry legend, Rich Ferris, and I are elated to put forth our suite of Privacy and Compliance software solutions.
It’s time to embrace technology and bring Privacy and Compliance for De-Identification into the Era of Big Data.
