Shakeup with Optum’s health data licensing sparks outcry among scientists

A Optum’s move to change long-standing practices for licensing data to academic institutions has sparked an outcry among researchers, who argue the move will make data access so costly and difficult that universities will scale back their programs. research.

Optum notified users that future projects must access insurance claims data through an enclave hosted by another unit of the company. Optum is the pharmacy benefits and data arm of insurance giant UnitedHealth Group.

But using the enclave results in higher costs and technical complications that can make it difficult to harness the data for AI studies and other types of research. Some researchers also worried that Optum’s review of projects before granting access to the data could restrict the types of studies that can go ahead. Due to higher costs, the University of Michigan is already telling faculty that it will have to limit the use of Optum data, according to an email obtained by STAT.

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“We will not be able to financially support the continuation of projects beyond our current license,” the email said. He added that researchers who want to use Optum data in the future will need grants to pay licensing fees, which typically cost tens of thousands of dollars per project.

Concerns about data access underscore broader tensions around the use of huge collections of health information controlled by commercial entities. Optum has one of the world’s largest troves of health data, spanning pharmacy and insurance claims, as well as clinical information such as patient diagnoses, treatments, and lab results. The data repository used by academic institutions contains details about the care of some 270 million Americans.

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Federal rules allow that information to be licensed to a wide range of parties, as long as it is not identified and cannot be linked to an individual. Because companies like Optum can collect data from a wide range of sources, they are an important provider for researchers who might not otherwise be able to access the same breadth of information. Optum data is licensed by many major universities across the country, including Stanford and the University of Texas.

“Optum has been evolving its data access models to meet the changing needs of real-world data access, data security, privacy, and utilization,” a spokesperson told STAT. The spokesman said the company is working closely with its academic clients “to help ensure current research is not disrupted.”

As the data owner, Optum and its parent, UnitedHealth Group, are free to decide which parties they want to license data to and under what conditions, which may not always coincide with societal interests in academic freedom and transparency.

In 2019, UnitedHealth Group taken out from a data collaboration with the Health Care Cost Institute, which uses data from several commercial insurers to support research on the drivers of health care usage and spending in the United States. Other insurers such as Aetna, Humana and Kaiser Permanente continued to provide data.

The academic institutions affected by Optum’s decision to change their data license agreements reflect a small fraction of the company’s business. It also does business with a much broader universe of healthcare providers, insurers, and life sciences companies.

The move does not affect existing licenses and some institutions are negotiating extensions to support the publication of ongoing research. The email from the University of Michigan stated that no new projects can be started after the current license ends in February and that research that is not supported by grants will not be able to access the new data portal.

“This is unfortunate given that OptumInsight has been our partner for almost 8 years and their data has provided a lot of valuable insights,” the email said.

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