Secrecy breeds suspicion. The role of secrecy in health care is practically non-existent so when we see examples of secrecy, as in the operational details of the Federal Data Services Hub, we get the recent outcry from a range of politicians and journalists waving privacy flags. For Patient Privacy Rights, this is a teachable moment relative to both advocates and detractors of the Affordable Care Act.
There’s a clear parallel between the recent concerns around NSA communications surveillance and health care surveillance under the ACA. Some surveillance is justified, to combat terrorism and fraud respectively, but unwarranted secrecy breeds suspicion and may not help our civil society.
“The Hub” is described by the government as:
“For all marketplaces, CMS [the Centers for Medicare and Medicaid Services] is also building a tool called the Data Services Hub to help with verifying applicant information used to determine eligibility for enrollment in qualified health plans and insurance affordability programs. The hub will provide one connection to the common federal data sources (including but not limited to SSA, IRS, DHS) needed to verify consumer application information for income, citizenship, immigration status, access to minimum essential coverage, etc.
CMS has completed the technical design, and reference architecture for this work, is establishing a cross-agency security framework as well as the protocols for connectivity, and has begun testing the hub. The hub will not store consumer information, but will securely transmit data between state and federal systems to verify consumer application information. Protecting the privacy of individuals remains the highest priority of CMS.”
Here’s where the secrecy comes in: I tried to find out some specific information about the Hub. Technical or policy details that would enable one to apply Fair Information Practice Principles? Some open evidence of privacy by design? Some evidence of participation by privacy experts? I got nothing. Where’s Mr. Snowden when we need him?