There appears to be a new Gold Rush in healthcare IT to leverage (sell) patient data to Life Science companies:
- Cerner is coming to market with its Learning Health Network (LHN);
- Fourteen health systems are coming together to launch Truveta;
- Allscripts has been at it for a few years with Veradigm;
- Health Catalyst is jumping in with Touchstone;
- Numerous payers, including Anthem and UHG;
- Best of breeds like stalwart IQVIA and relative newcomer TriNetX…
…and I’m sure many others are in the wings.
While the selling of patient data, predominantly claims and Rx data, has been going on for years (Anthem, IQVIA, Optum and others), this latest boom is being driven by the confluence of two factors. First, the FDA has provided recent guidance on use of Real World Data (RWD) and Real World Evidence (RWE) in regulatory submissions for drug development, which has the promise of lowering development costs and accelerating time to market for new therapeutics. Secondly, the ubiquitous use of EHRs has created approximately a decade’s worth of discrete clinical data that has far greater fidelity than claims data – the predominant data source in the past.
Quick Look at Past, Fast Forward to Present
Selling health data to third parties such as life sciences has been going on for years, if not decades. Data has always been de-identified with filters put in place to insure that in smaller communities, a patient is not easily identified but rarely if ever has a citizen been informed that their health data is being sold.
Cerner has been selling de-identified data since 1999 when it offered Health Facts (data on a hard drive sent to purchaser). Anthem and UHG/Optum have probably done something similar for at least as long, if not longer – but only claims data (including meds and maybe lab data). Then there is the market gorilla, IQVIA who’s reach is global and offering extensive. This data was bought from providers and payers and sold directly to life science companies. The data, particularly clinical, was a mess and extremely costly for life science companies to clean and make use of.
Then there was a start-up, Flatiron Health that figured out there was a potential gold mine if one could get clinical data (in their case, oncology data specifically), clean it and normalize it for clinical research and drug development. Flatiron acquired a specialty oncology EHR, renegotiated its rights to the clinical data with customers and created a rich repository of clinical data. This asset was deemed so valuable that Roche paid a whooping $2.1B in total for Flatiron. This caught everyone’s attention.
Unlike the offerings in the past that bought data from originators and sold it, today’s prevailing business model is shifting. It is fully cloud-based, and rather than selling the data, health systems give access to the data in return for their data to be cleansed, normalized and curated for internal research purposes. Some RWE/RWD vendors are even offering sophisticated data analytics tools to providers to assist them in analyzing their data and granting access to the complete repository of data. Lastly, providers may also have the opportunity to participate in clinical trials, an additional source of revenue.
At this time it is difficult to put a hard number to just how big this market opportunity is. In my research to date the market size numbers are all over the map from as little as $1.3B by 2022 to as high as some $40B by 2025. Obviously, I am going to need to do some more research here but there is at least one recent data point. At JPM’21, CEO Brent Shafer stated the company sees a potential for $1B in revenue in the next few years from its RWE/RWD initiative. Add that to the Roche acquisition of Flatiron clearly signals, there is gold in those mountains of clinical data.
Great article to the point summarizing all the key activities that are going in the RWD/RWE space. I have worked with several large life sciences companies in the past on utilizing clinical data for secondary purposes such as safety signals.
Thank you Amit for your comment. It is a very dynamic space right and I do believe the result of using this data in research will lead to better therapeutics and clinical pathways. The danger I foresee is a potential back-lash by some in the patient community regarding patient data rights and control. Data governance will be of paramount importance.
Great stuff! As the world prepares to combat pandemics such as Covid-19 and the Health systems and Payers double down their efforts on EBM, Precision medicines and Precision public health , we will continue to see business models evolve. Furthermore, more data available will help in underwriting and potentially lead to an wider array of products in Health Insurance – move to consumerism!
Thanks for chiming in Soumitra. Strongly agree that these secondary uses of health data show incredible promise to advance care and hopefully access to care as well. We still have quite a ways to go to realize this dream, but with enough resources shifting to enable such, it is in our collective future.
John, doesn’t this monetization of PHI without patient consent undermine trust? Identity theft is top of mind these days – what do you think will happen if “PHI theft” becomes lodged in the public consciousness? It’s painfully obvious that the lip-service given to data liquidity and patient empowerment will only remain lip-service. The industry needs to find a way to cut the individual patient in on the use of their own data. What is the current legal status of data ownership? If indeed I “own” my data, one way to validate that is if I can sell it in a free and open market, like any other asset. That’s one way to build trust, but I’ve read nothing along those lines in the current literature (maybe you have some insight to suggest otherwise?).
Valid points Stephen but today providers have one sign a form before any first visit that typically has language allowing them to use the health data they collect on you for secondary purposes. Virtually all of us sign these forms without thinking twice. Whether or not that is a wise decision is up for grabs.
However, countless surveys have found that most consumers/patients do not mind having their data used for secondary purposes to advance care treatment and quality. What the consumer does not know is that there is money exchanged between data stewards (providers, payers, etc) and data acquirers. Not sure any survey has looked very deeply into that issue. Also note, that virtually all of this data that exchanges hands is de-identified.
Do you have finalized or recent report for the topic?
I’m at medical EDP company and so be interested in.
Fred, we are currently studying secondary uses of clinical data and the vendors that provide such. We plan to releasee a report on the subject in second quarter of 2022.
Thanks for your article. It gives me new perception.
Can I get more detail or in dept report?