Study finds health-data companies selling access to patient records
Some health-data companies are selling access to patient records to pharmaceutical companies without patients’ knowledge, according to a new study.
The paper found “complex reciprocal relationships” between data brokers, physicians, chains of primary-care clinics and the pharmaceutical industry, in which patients’ health records were used to harvest potential trial participants or customers in exchange for money.
In some cases, doctors were paid for their involvement.
The study was released Monday in the JAMA Network Open publication from the Journal of the American Medical Association. It relied on 19 confidential interviews with industry insiders, including data-company employees and contract physicians, and a review of public documents, including investor presentations.
Canada’s health care system has increasingly adopted electronic medical-record systems in recent years. The switch has been prompted by patients who want more access to their records and doctors who tire of paper records and faxes, and want to be able to share information more easily between offices and hospitals. Mark Carney’s Liberals promised in the recent election to introduce national standards on electronic records.
But the paper, titled “The Primary Care Medical Record Industry in Canada and Its Data Collection and Commercialization Practices,” points out some of the downsides that can appear when private companies are integrated into the health care system in crucial roles without enough oversight.
The research focused on two data companies that it declined to identify. Sheryl Spithoff, the lead author and a family physician and scientist at Women’s College Hospital in Toronto, said the companies were not identified because the researchers wanted to focus on practices that were spread throughout the industry, rather than narrowly critiquing two companies.
There were two models identified for monetizing patient records. In the “conventional” model, a data broker bought access to medical records from a chain of primary-care clinics, deidentified the data and conducted an analysis of the records on behalf of pharmaceutical companies.
In a newer model, referred to as vertically integrated, a data broker bought a chain of primary-care clinics so it had direct access to the records. The company then ran algorithms on the data to find patients who could be eligible for a pharmaceutical company’s product, and reached out to the patient’s physician. According to one interview conducted for the paper, a participant said a chain of clinics was needed to achieve scale and going to individual clinics would be too time-consuming.
Access to this data could “potentially generate hundreds of millions of dollars,” according to the paper.
Physicians hired at the for-profit clinics could also be paid for their role in the process.
“They were very clear they were compensated not for prescriptions, because that would run into anti-kickback regulations,” Dr. Spithoff said. “But rather, they were compensated for their time to review that list of patients and decide if they need to come in for further evaluation and treatment.”
Pharmaceutical companies have argued that this system is good for patients as it can give them access to clinical trials and treatments they otherwise may not know about.
But Dr. Spithoff said that those benefits do not outweigh the risks to patient privacy.
“At minimum, there needs to be transparency around this and the ability of patients to decide, do I want to opt in or opt out of this?”
She recommended that privacy rules be strengthened to protect health data even after it has been deidentified, and that regulatory colleges should make it clear to physicians that they should not participate in these programs.
“Whether it is legal or not, it very clearly does not align with what patients say about how they want their data to be used.”
This article was first reported by The Globe and Mail
