On February 16, fourteen of the largest health systems in the country announced the formation of a company called Truveta. A Seattle start-up led by a former Microsoft executive, Truveta’s data platform will “help deliver personalized medicine, enable health equity, and empower the health community with insights on how to best treat patients,” according to their website.
At the heart of Truveta’s proposition is that there has not been enough data to statistically represent all patients, nor the technology to structure, normalize, and deidentify such data.
Truveta stresses ethics, shared purpose, empowering clinicians, guiding research, and saving lives as their reason for being and the collaboration of these health systems as a ground-breaking effort.
If you don’t feel a little circumspect after reading this litany of goodness, you should. Why? Let me count the ways:
Behind all the talk of ethics, shared purpose, pandemic preparedness, and the good of humanity, Truveta is in business to sell clinical data to whomever will pay the most for it (most likely big pharma). While there is no mention of this on the company's website, articles in the Wall Street Journal and Fierce Healthcare make this business proposition clear.
Further, there is nothing new about the Truveta collaboration and there is nothing inherently advantageous in bringing hundreds of hospitals together. We have Group Purchasing Organizations and industry associations pursuing their own patient data strategies. Rather, these collaborations represent new lines of business for their members who see a pretty bleak future in running hospitals and want to jump on the data bandwagon before new privacy and security regulations make these kinds of collaborations much more difficult, if not impossible.
In addition, health plans are the segment of the healthcare industry entrusted with managing clinical and administrative data for the consumer under the new rules. No provider, however large, has a complete picture of a patient’s health, and disregarding data collated at payers means important data is likely missing.
The industry is changing in other ways too. Ownership of patient data (in the property sense) is a thorny issue but control and stewardship are not. Patient control, or consent, to information sharing is central to the 21st Century Cures Act and the CMS and ONC Final Rules. Providers and payers are stewards of patient data and this rush to profit from the use of patient data is poor stewardship at best.
Further, in the near future, health data will reside on patients' digital devices upon their request. In this model, each patient acts as their own health information exchange delegating viewing and usage rights beyond those mandated by regulation to whomever they choose. This is the only truly effective approach to liberating data from the institutional silos that entrap them.
Truveta doesn't meet the moment in any way, and feels like a desperate grab for resources in a time when the industry is changing underneath providers looking for a way to navigate and survive in a new world they don't fully understand. While we welcome new and innovating ways to collaborate and share data, this effort is missing the mark.
Be safe, and stay well.
Denny Brennan, Executive Director
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