Why MAHA wants to make health data much more accessible

The MAHA Institute, a think tank formed by allies of Robert F. Kennedy Jr. after his appointment as health secretary, held a Monday event in Washington emphasizing the benefits of opening up health data sharing in the United States. The event focused on how sharing patients' health records with federal researchers could benefit the study of the origins of chronic diseases. In a speech, Kennedy said user agreements restrict access to data, giving institutions that control important health data the power to decide who can study it and what questions they are allowed to ask, which creates protectionism in science and leads to the politicization of science. He argued that a qualified researcher with legitimate hypotheses should not need permission from a gatekeeper to test it, particularly an industry gatekeeper; his remarks began and ended with standing ovations.

Kennedy also described what he wants to aggregate: immunization records, clinical data, laboratory results, pharmacy information, and claims to create a more complete picture of a patient's health over a long period of time. That data would come from state health information exchanges, EHRs, laboratories, Medicare, Medicaid, and commercial health data platforms like HealthVerity. He said these data are already being used to answer some of the most important questions, but too much remains fragmented, vulcanized, difficult to link, and inaccessible to researchers, and he cited a desire to aggregate the data and make it available to all researchers.

The idea is controversial because of privacy concerns. Speakers throughout the day brought up Nebraska's partnership with the federal government: as reported earlier this year by KFF Health News, Nebraska's health information exchange network, CyncHealth, is sharing patient data with the federal government to enable studies on vaccines and autism. KFF reported that Nebraska's partnership was with the Centers for Disease Control and Prevention and focused on vaccines and autism, while MAHA Institute President Mark Gorton said a partnership between Nebraska and the National Institutes of Health has successfully produced data for the study of chronic disease and serves as a proof of concept for the state-federal hybrid model. Neither partnership seems to have been publicly announced, though the NIH has already stood up an effort to build Medicare and Medicaid databases within the NIH in an effort to better understand autism.

Additional context: Nebraska's CyncHealth was, until the end of last year, led by Jamie Bland, who became chief data strategist of the MAHA Institute in April. At the time of KFF's reporting, leaders of other state health information exchanges decided not to share information with the government. Using such data for research could run into patient privacy and ethics concerns.