Going to the doctor can involve sharing your most personal information, including details about your health, medical history and recipes.
Everything ends in its medical record, but a new study conducted by researchers at the Women’s College hospital in Toronto discovered that in some cases, private companies access parts of those data and sell them to pharmaceutical companies.
“This is really an area where we need transparency,” said the main author of the study, Dr. Sheryl Spithoff.
The study, published in Open Jama NetworkHe examined how the medical record industry in Canada works and how patients’ data between different private entities flows.
Through a series of 19 interviews, the researchers concluded that “the chains of Primary Care Clinics for profit, doctors, commercial data corridors and pharmaceutical companies … work together to convert the medical records of patients into commercial assets.”
These assets, according to the study, are used to “promote the interests of pharmaceutical companies.”
Spithoff and his colleagues identified two different models. In one, a private clinic sells data to an external company, with personal information such as deleted names and dates. Then, the company offers to sell or analyze that desidentified information for its customers in the pharmaceutical industry.
In the other model, the clinic is a subsidiary of the company that collects the data, which gives that company even more straight Access to patient information.
The study said that patients were not included in decisions about how their data were used.
“We need supervision,” Spithoff said in an interview.
“What we know about other surveys and interviews with patients is that this is why they want their data to be handled.”
Experts ask for updated privacy laws
The study findings suggest that these practices could give the pharmaceutical industry more influence on patient care in Canada.
Matthew Herder, director of the Institute of Health Justice of the University of Dalhousie in Halifax, said that although there may be potential for this type of data exchange to help patients, there is also the risk that these models boost patient care in a direction that benefits pharmaceutical companies and increases the costs of medical care systems.
“All these things are happening without any degree of transparency,” Herder said. “That is why this document is such an important article. It is beginning to bring to light what is really happening.”
The Canadian privacy commissioner office declined to comment on the study itself, but said that organizations subject to privacy laws must follow certain rules on the protection of personal information.
Although most provinces and territories have privacy laws specifically related to health records, Lorian Hardcastle, assistant law professor at Calgary University, said they are outdated and need strengthening.
As the medical care system advances towards more electronic health records, often administered by private companies, Hardcastle said that updates are needed to better protect patient information.
“The data that are managed not on paper, but by third -party entities, really demand that the policy makers rethink this legislation that was created decades ago when they were still paper records in a doctor’s office.”
Some of the current laws do little to protect patient data from changing their hands if personal identifiers have been eliminated, said Hardcastle.
“If the data has been identified and it is not reasonable that the reidentification is possible, the law offers a lot of protection,” he said.
“Unfortunately, however, what we thought 10 years ago were unidentified data, we are now giving us Big Data with ia can be reidentified.”
In a statement, the Ontario privacy commissioner office said that health information custodians must take reasonable measures to ensure that the data is protected and safe, and recognized health data have become an increasingly valuable product.
“There must be a greater responsibility for the use and sale of unidentified health data, and what happens with that data after it is sold,” he said.
The office advocates changes in Ontario’s privacy legislation to add more railings as risk assessments when it comes to personal health information.
What you can do
For patients who wonder what could be happening with their health data, Hardcastle said he begins by asking his clinic for his privacy policy. Beyond that, he said that any problem can be informed to a privacy commissioner and that concerned patients can promote legislators to update privacy laws.
Metro tomorrow4:38Medical data for sale?
Your medical records could be on sale without you knowing it. As soon as we will see a study that discovered a complex reciprocal relationship between data corridors and primary care clinics, where pharmaceutical companies sold and harvested patient data for pharmaceutical companies for potential clients.
“If they listen to many members of the public that this is something that worries them, that they can motivate them to investigate this more thoroughly,” he said.
Family doctor Dr. Danyaal Raza in Toronto said that the “marked and dramatic” findings of the study should encourage patients in private clinics and for profit to ask some difficult questions so that they can be as informed as possible.
As former president of Canadian doctors for Medicare, race sees this as another risk that comes with private companies that provide medical attention. Legislative changes are part of the solution, along with more attention to primary care, he said.
“What we must do to resolve the primary care crisis is to present solutions that put patients first and not in profits.”
