Delivering on the promise of digitized health records

In this Hot Take, we’re going to look at the implications and possibilities of an emerging market for clinical health care data. While healthcare data being for sale is nothing new, the idea of this type of detailed, computable patient data being available for purchase for the first time has ignited debate in the industry. As with most hot button topics in this industry, the situation is nuanced and deserves a closer look. 

Life sciences companies and CROs are the stakeholders most interested in this data, which can be used to advance drug development for rare diseases, among other things. In a recent move that turned heads, instead of licensing data individually to their IT providers, a consortium of 14 major provider networks pooled their assets to form Truveta, and will now hold a tremendous amount of proprietary data resources. As more technological barriers are overcome, the buying and selling of healthcare data will likely accelerate, and we will see other new business arrangements emerge to deliver on the opportunity. 

Now let’s take a look at what Chilmark founder and CEO John Moore has to say on the subject.

Transcript Below:

[00:00:09] A couple of weeks ago I wrote a piece about health care data being for sale. That actually ruffled a few feathers out there in the industry, and I’m here to provide a little more clarity about that particular market and what’s happening with health data, why it’s being sold and the purposes it will be used for. I’m John Moore, I’m the founder of Chilmark Research. And if you like what you hear today, please click the like button and ask others to check it out as well.

[00:00:47] So what’s happening in the market is that we’re seeing quite a bit of activity around the selling of clinical data, primarily EHR data to life sciences companies. And there are a number of players that have recently jumped into the market. The biggest announcement, I believe, was the recent one by a consortium of health care providers, 14 of them to form Truveta, where they will combine all their clinical patient life data assets and begin providing those to the life sciences market. That’s one of many that are in this market. Of course, this is nothing new. I mean, health data has been sold for decades, literally decades.

[00:01:34] Primarily, it was based on claims data, prescription data, maybe some lab data. Only recently have we had the opportunity to actually use clinical data because of the adoption of EHR that occurred as part of the HITECH Act that was passed back in 2009. Since that time, we’ve seen rapid growth in EHR adoption. Most people have their records in some sort of digitized format.

[00:02:00] And that has created a vast repository of clinical data of patients. This clinical data could be mined to better understand who those patients are, what diseases they’re dealing with and most importantly, particularly with these extremely large data sets of patient data. Say there’s a couple of vendors that are close to one hundred million patient lives in their data repository. Now you can begin to look very discretely at patients with–we call them orphan diseases or rare diseases or orphan drug development. Orphan drug development now has become a pretty hot area in the life sciences market because there’s fewer regulatory hoops to approval to get an orphan drug to market. So what life science companies are trying to do is find who are those patients out there that they can recruit into a clinical trial? Today, roughly 50 percent of all clinical trials fail because of lack of recruitment numbers, and of a hundred people contacted and asked to join a clinical trial, roughly only 20 will accept the invitation.

[00:03:30] So we have a real issue here, or at least life sciences companies have a real issue here, trying to find those patients, particularly those with rare diseases, and get them enrolled in a clinical trial and get them to see through to the end the clinical trial. And it is the hope that these new data sets that are becoming available will help enable just that. I think this is actually great for the industry. It’s always been a dream of mine that someday, once we digitize health care data and patient data, we can actually start to mine that data to understand what is good in terms of what’s working, and treatment protocols that actually provide good, efficacious care that is safe for patients, and better be able to fine tune that ideal of personalized medicine for the individual patient.

[00:04:28] This data–and allowing life sciences companies to use the data in this capacity for developing new therapeutics, new drugs and surveilling, and watching for the efficacy value of those drugs–is what this data sharing can bring to market and help us all see better outcomes for ourselves and for our loved ones.