Health systems have a large amount of patient data through EHRs and other digital platforms managing administrative tasks and clinical care.
The de-identified patient data is useful for creating large language models, precision medicine, drug discovery and more. There are opportunities for hospitals and health systems to commercialize patient data and monetization could be valuable for hospitals with thin margins. But is it ethical?
Four healthcare leaders addressed the question during a panel at the Becker's Health IT + Digital Health + Revenue Cycle Conference Oct. 1-4 in Chicago.
"Monetizing data comes up somewhere between every seven or nine seconds in healthcare, and it depends on what you mean by data," said Richard Zane, MD, chief innovation officer, UCHealth. "If we're going to see 500 patients who are a certain age with specific clinical genomic issues, and we're going to sell that data set, we can't do that, but can we optimize algorithms? Can we use clinical data in drug discovery? Those things are happening every single day."
Donna Roach, CIO of University of Utah Health in Salt Lake City, said her institution is conservative on commercializing patient data. She said much of the ethical discussions are focused around how datasets for particular patient populations are used and whether the patients consented.
"If you have a need and the consent isn't there, you may have to do the honors task of going back and getting consent, but once the consent is there, we can move forward," she said. "We sometimes jump to the conclusion that EHR data is so rich and why can't we generalize their consent to be in the EHR, but they've not consented for commercialization of their data. That's the balance and tug of war right now."
Academic medical centers in particular are poised to advance healthcare research, drug discovery and large language models. But organizations need to ensure they aren't exploiting patient data or unnecessarily risking HIPAA violations.
Christian Lindmark, vice president and chief technology officer at Stanford Health Care and School of Medicine, agreed most health systems and physician groups have taken a conservative approach to patient data commercialization, but cautioned non-traditional entrants without the same hesitation could reap the benefits. Startups offering a data-driven model for primary care are poised to collect and commercialize data quickly.
"They would probably be more on the forefront and I would assume we'd get some legal precedent around that if we went that route," Mr. Lindmark said.
Sarah Poncelet, chair of strategy execution at Rochester, Minn.-based Mayo Clinic, said the health system isn't in the business of commercializing patient data, but instead aims to back or create solutions that would reduce time spent in the EHR. She also craves more longitudinal data.
"Over time, ideally it would be great if the patients owned their own data and we had ways for them to be able to consent and allow for us to have new findings," Ms. Poncelet said. "It's more around having the new findings so we can accelerate research through application and within our Mayo Clinic Platform, we have a lot of groups who are consenting to put their data into a shared cloud."
Researchers can access the patient data through a de-identified blockchain to accelerate findings of early hypothesis research and advance medicine.
"It's not about commercializing patients' data, it's about leveraging the information to accelerate findings."