So let me get this straight…
The largest EMR company in the country (Epic) participates in the largest nationwide trust framework (Carequality) which permits “onramp” companies (like Particle Health) that, in turn, provided protected health information API data access, for a fee, to other companies, among them a company (Integritort) which uses the data for the “apparent purpose of identifying potential participants in class action lawsuits.” (quoting Epic’s Issue Notification)
What could possibly go wrong?
Well, something did go wrong. Participation in Carequality’s trust network relies on, well, TRUST, and that the queries for patient data are for the intended use of patient treatment. It appears that both were violated here. Healthy networks can suffer a failure, self repair, and still continue to operate, and I’m reading that is the case with Carequality.
Scott K., you likely tagged me on Matthew Holt's post because of my history running Dossia, a personal health record company, and also what I’m doing now - running a FHIR-based healthcare analytics company.
A good friend of mine was running a company that has a groundbreaking breast cancer lab test, and he was raising money right at the height of the Theranos debacle. It was nearly impossible to raise money in the diagnostics space for a couple of years. He called it “The Theranos Effect.” Both the onramp companies, and many of the companies that are clients of the onramp companies are VC backed. Proceed carefully.
At Dossia, a SaaS, we ultimately collected PHI for several million people on our servers. We spent a lot of money with attorneys, security professionals, and auditors to make sure we were doing everything we could to operate within the regulations, and keep the records safe. It was a ton of work. Lots of sleepless nights. Today, our customers download our software and run it in their environment (or their own cloud account). Now, I sleep like a baby.
Lastly, many people continue to express their frustration that the healthcare IT architecture we have is all wrong - that we should have the patient at the center of the healthcare system, and if we did that, we wouldn’t have these problems. I would love to see that too - and Dossia was one such attempt at achieving that goal. I keep telling people - we need to work together with a reality-based frame. It’s true that if we were to re-architect the healthcare system from scratch, it wouldn’t likely be anything like we have today. It would be totally different, with entirely different problems.
$13B was invested into Uber to disrupt the taxi industry. I think it’s going to take a LOT more than that to disrupt healthcare. Be patient, we’ll get there.
There's been quite the fuss in the health data nerd world about Epic and Particle's dispute over access to patient data. But if you're going to pretend that data is the new oil, you're going to have to expect war to break out over it. Matthew Holt tries to put it all into the bigger picture perspective
https://lnkd.in/gjyBrjxk
If data is the new oil, there’s going to be war over it
https://thehealthcareblog.com
Let’s start healing ourselves in healthcare to transform healthcare so that patients can heal and transform their lives #healthequity #patientadvocacy #traumainformed #patientsafety #activist #empathy #compassion #love
5mohttps://www.serifhealth.com/blog