Contemplating Health Data Rights as Civil Rights

BY ERIC PERAKSLIS ON BEHALF OF THE LIGHT COLLECTIVE Recently, despite decades of experience in cybersecurity, privacy, and data science, I got sent back to school.   As a member of the Council of the Wise at the Light Collective, a patient advocacy group with a focus on healthcare technology and privacy, I attended a town hall event entitled “No Aggregation Without Representation,” which featured four eminently qualified leaders of the BIPOC and data advocacy communities: Dr Maya Rockeymore Cummings, Tiah Tomlin-Harris, Jillian Simmons, JD and Valencia Robinson. I was unprepared for the ownership and authority of these four leaders – and unprepared, too, for how they were able to transform professional truisms I’ve often relayed myself into something far more personal, meaningful, urgent, and authentic. The commercial practice of aggregating health and consumer data crosses the borders of healthcare, retail, marketing, communications, transportation, and others. The risks and consequences (including abuse) related to the exploitation and monetization of personal health data are enormous, complex, and largely or entirely borne by the individuals whose data is being collected – whether they know it or not.  What’s more, none of the current patchworks of 3-letter federal regulatory bodies (FDA, FTC, HHS, FCC) have the remit or resources to encompass the totality of it. Armed with pre-Internet privacy laws from the 1970s or with insurance po...
Source: The Health Care Blog - Category: Consumer Health News Authors: Tags: Health Policy civil rights Healthcare data Source Type: blogs