Issue No. 4 of StartUp Health Magazine is dedicated to 8 Health Moonshot Principles. StartUp Health sees these moonshots taken together as, “a blueprint for achieving the impossible.”

There’s an aspect of U.S. health care that currently feels impossible to achieve, and that’s consensus on what would constitute a sound approach to covering all Americans for health care as a civil right and whether the nation can “afford” doing so.

On pages 22-23 of the digital magazine, you’ll find my essay, “From Health Consumers to Health Citizens.” This write-up summarizes the plotline of my book titled HealthConsuming, which features that six-word tagline. My StartUp Health piece tells my personal story about taking an oath to become a citizen of Italy, a member-state of the European Union. By becoming a citizen of Italy, I became at once a citizen of the EU with all rights and responsibilities to the region.

Two key rights that immediately flowed to me were becoming a health citizen of the EU, and obtaining the “right to being forgot” under the GDPR, the General Data Protection Regulation.

The GDPR goes well beyond HIPAA in covering not only my personal health care data generated in hospitals, doctors’ offices and pharmacy, but all of my personal data. GDPR operates on an opt-in principle, versus HIPAA’s opt-out approach.

I learned about the concept of “health citizens” when I worked in Europe beginning in the late 1980s, as the European “area” began to morph into the larger vision of a Union. Jean Claude Healy working in the European Commission back then spoke and wrote about the emergence of e-Health and the evolution of European patients as health citizens. Healy connected the dots for me between bioinformatics to health citizenship.

Healy was the first to plant this seed in my thinking about patients having civil rights for health access, underpinned by digital technology. It was early days — America Online, CompuServe and Prodigy were walled gardens, and by the time I returned to the U.S. from working in London I had begun to explore patient list-servs like Gilles Frydman’s cancer community and Jack Barrette’s work building Yahoo! Health groups.

All these years later, I don’t have to pay for three separate subscriptions for internet access as the Internet is open, and I can afford to pay for a data plan. Not all patients can, nor do all Americans have access to broadband in their communities in a time when connectivity is truly a social determinant of health.

All these years later, my health and personal data are digitized, and likely to be breached in some way, sooner rather than later. And HIPAA, to me, is more part of a patchwork quilt than a more protective GDPR.

We seem to “rent” our health and health care system versus own it, quoting Esther Dyson from an email communication I received a couple of years ago. My moonshot for the possible is for the U.S. to forge a system that bolsters health equity, outcomes, empowerment, and indeed, personal and community health ownership.

Health Populi’s Hot Points:  After you review the piece, please let me know what you think and whether you believe health care is a civil right in the U.S. What do you think the prospects are for Americans to join the world in achieving a uniquely American flavor of universal health care as other developed countries do the world over, who are shown in the check-mark graphic here?

 

1 Comment on From Health Consumers to Health Citizens – a U.S. Patient Rights Moonshot?

Anshuman Sharma said : Guest Report 5 days ago

Healthcare is not a civil right in the US as that requires top down protection of access to healthcare resources (including SDoH). Unless we evolve as a nation to combine top down protection of access to healthcare while removing protectionist laws that hamper competition (or craft guidelines that preserve competition) this will continue to be a pipedream.

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