Trump's health data plan could hand over keys to big tech – and lock in startups

The proposal will allow healthcare providers and private companies to share patient data more freely, with a commendable purpose: to break down long-term silos and accelerate the transition to AI-powered healthcare. In principle, this is good news. 60 companies have been signed, including Amazon, Apple and Google. Under the program, companies like Apple could theoretically take advantage of other participants’ health records and wellness data, such as weight loss and fitness service Noom. This could allow tech giants to gain unprecedented access to people’s daily habits, what they eat, how often they exercise, and even how much sleep they get.

I think AI can bring huge benefits to global healthcare over the next decade. Yes, I'm biased. However, when healthcare systems centralize their data, it can improve models that automate administrative tasks, enhance clinical procedures and ultimately improve patient outcomes.

Trump’s plan could help bring together the U.S.’s broken private health system. The Mayo Clinic in Phoenix should be able to access patient records from the medical center in Tucson without friction. Current debris delays in treatment, resulting in inaccurate diagnosis and sometimes preventable errors.

But attracting large technologies to manage this data can backfire. This time, the United States risked refilling information, mastered by some major companies, creating a “health data oligopoly” that stifled innovation, hurt privacy and pushed smaller players out of the market. We've seen this movie before. Apple and Microsoft dominate personal computing, and Google controls nearly 90% of global searches. In each case, market leaders use scale to get competitor and vacuum user data. We cannot allow the same pattern in patient information.

If the platform giant becomes the gatekeeper, access can be locked behind proprietary pipelines and opaque terms. Startups are where many real innovations in the industry take place and they get squeezed. BetterHelp connects millions of dollars to mental health services through its app. GABBI uses predictive analytics to assess breast cancer risk. These companies, with countless others, often rely on pilot projects and data sharing partnerships with hospitals and universities to develop and refine their products. My own company, Rhazes AI, has benefited greatly from using real patient data through partnerships with public and academic institutions.

US startups are thriving in similar ecosystems. Spring Health, now a unicorn mental health platform, initiated the pre-seed trial using data from large antidepressants clinical trials. If Trump’s plan makes Big Tech the primary gatekeeper for health data, these opportunities could dry up. In an era of chronic diseases, an aging workforce and a shortage of frontline nurses in the United States, we need fresh ideas and disruptive technologies more than ever.

A better model is to use health care providers as primary custodians and have anonymous research and innovative data. This approach best protects privacy and market equity.

Our future health projects in the UK are designed to promote research on diseases and, once completed, will allow health researchers to obtain a biobank of 5 million blood samples. The NHS collaborated project imposes strict safeguards on patient privacy, including “air lock” data in the database, so it cannot be exported freely. It is correct that large-scale databases are being used for the public interest rather than economic interest. It is crucial that companies will have the same access rights, whether they are just starting out or tech giants.

Similarly, if the doctor transcribed a private consultation about substance abuse or mental health, the patient would like that information to remain in the provider’s record. It brings large-scale technical risks to erode this trust.

Some critics argue that healthcare providers cannot be trusted to protect sensitive data, and there is a little bit. Earlier this year, huge violations exposed personal health care data for Connecticut residents, including social insurance numbers and medical details. The UK's NHS suffered cyberattacks, including cyberattacks related to patient deaths. But the answer is not to unload this responsibility to the company's giants. Governments should invest in hospital cybersecurity, rather than handing over keys to companies whose business models rely on data.

The Trump administration said it hopes to release isolated data, but it has the potential to build new islands with the Shinier brand. Delegating large tech companies to control health information could kill innovation, compromise privacy and eliminate smaller health technology players, a truly, fair and progressive company across the U.S. health system. The path forward is clear: provider-led custodians, interoperability under open standards, equal access, strict auditability, and design privacy. This is how to catalyze AI healthcare while protecting competition, trust and most important patients.

Editor's Note: Neither the author nor the company has any relationship with the mentioned company/product.

Photo: From 2015, Getty Images

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