Access to Medical Data Saves Lives

Access to Medical Data Saves Lives

ProPublica: In January, the Biden administration pledged to increase public access to a wide array of Medicare information to improve health care for America’s most sick and vulnerable.

…So researchers across the country were flummoxed this week when the Centers for Medicare and Medicaid Services announced a proposal that will increase fees and diminish access to claims data that has informed thousands of health care studies and influenced major public health reforms.

Using big Medicare databases has never been cheap or easy. Under the current system, researchers could have the data transferred to secure university computers for about $20,000–that’s a lot but once the data was on the university computers it could be accessed by multiple researchers, cutting costs. A PhD student, for example, could write their dissertation under their professor’s data plan. Under the new system it will cost $35,000 for one researcher to  to access the data which will be held on government (CMS) computers. Moreover, it’s unclear how complex statistical analysis will be performed or how congested the CMS systems may become.

Research teams on complex projects can include dozens of people and take years to complete. “The costs will grow exponentially and make access infeasible except for the very best resourced organizations,” said Joshua Gottlieb, a professor at the University of Chicago’s Harris School of Public Policy.

Public data should be open access to researchers, with appropriate anonymization. We know from IP law that barriers to access reduce research and innovation; and in the medical sphere research and innovation saves lives. Open access is also a check on how governments spends taxpayer money and the effectiveness of such spending. I also worry that raising the dollar cost of access is a prelude to other restrictions. The NIH, for example, is restricting access to genetic data if it thinks the researcher will be asking forbidden questions. Even without such explicit restrictions, there is a chilling effect when researchers are beholden for access to the government and indeed to the very agencies they may be researching.

I place a high value on privacy but I get suspicious when governments invoke privacy to block citizen access to government data but not to block government access to citizen data. Medicare databases have always been appropriately anonymized and the dangers of these databases in anyone’s hand, let alone researchers, is far less than anti-money laundering, KYC laws and suspicious transaction reports in banking, automated license plate readers that the police us to scan billions of license plates or mass surveillance of the communications of US citizens under FISA. Sadly, this list could easily be extended. Liberty thrives on the people’s privacy and the government’s transparency.

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