By Darlene Storm
A very broad government biosurveillance plan that makes your health records a matter of “national security” showed up on my radar today. It opens the door leading to the government having near-real-time access to monitor your health. I apologize for only hearing about this, and bringing it to you at the last minute, since the deadline to submit comments is 5 PM Eastern time today, May 21. Of course the reason we might not have heard much about this “sneaky biosurveillance plan that will track American’s health records” is because the 50-page departmental draft (pdf) states, “Do not cite or quote.” Well that’s too damned bad, since this affects you, me, our kids, everyone in the United States!
It’s regarded as national security, meaning in the same way NSA surveillance was a secret until the Snowden leaks, you won’t even know how your health is being spied upon and shared with others. The 2015-2018 National Health Security Strategy (NHSS) (pdf) will keep track of and share information about not just sick people and sick animals, but even sick plants.
“The information collected by the government will be ‘all-encompassing’ and include ‘what our health status is, whether we exercise, how often we get a cold, or what kind of medications we’re taking,” according to the Citizens’ Council for Health Freedom (CCHF).
“This is not privacy.” Twila Brase, president and co-founder of CCHF, added (pdf), “Officials want a ‘near-real-time’ reporting requirement for electronic data systems. What is a ‘health threat’ or ‘incident’ that could jeopardize our ‘national health security?’ The Strategy says these could include terrorist activities, antibiotic resistance, climate change or subjects surrounding the economic environment. In other words, anything and everything could become a health threat by the government’s standards.”
Brase told CNCNews that the “NHSS proposal would allow the federal government to monitor an individual’s behavior before, during and after any government-defined health ‘incident.’ It’s very broad. It doesn’t seem to have any limits, except they say something about, you know, properly protecting the data. But from our perspective, if the government gets access to this kind of data, [and] is allowed to do research with the data…then our privacy has already been compromised. The government has already said that our data is their data for their purposes of national health security.”
There’s an old ACLU “joke” about ordering pizza in the future that’s meant to highlight the unpleasant “potential for centralized monitoring” and “the possibility of a dark future where our every move, our every transaction, our every communication is recorded, compiled, and stored away, ready for access by the authorities whenever they want.” In that future, a person wouldn’t be allowed to order a pizza or soda that would be “unhealthy” — or they could order “unhealthy” pizza but would be charged a health penalty fee and must sign an insurance liability waiver — since the pizza employee has access to the person’s health records. We are already tracked via our cell phones, websites, purchases, license plate readers and now biosurveillance plans to track Americans’ health records. It’s sad that this “joke” from 2006 is very nearly our reality in 2014.
The draft proposal (pdf) claims NHSS will create “health situational awareness” made up from “many types of health-related and non-health-related data.” A graphic illustration of inputs to health situational awareness includes: non-health sources like informatics, supply chain, energy, environment, event driven, media, social determinants, transportation services, active intelligence and veterinary. Examples of health-related sources include: morbidity and mortality, lab/diagnostics, social service utilization, disease prevalence, health service utilization, public health investigation and response asset data. All of the above are merely part of the big picture, or “examples” of what data feeds into the “biosurveillance” portion of public health and medical situational awareness.
Put another way:
Situational awareness will involve collecting, aggregating, and processing data from both traditional and nontraditional sources (such as social media) and from various governmental and nongovernmental stakeholders, while ensuring that data from all sources are of high quality. Health situational awareness will include the ability to interpret data to create relevant, tailored information that decision-makers can use. Decision-makers will have the capability to visualize and manipulate data from many sources to create an operational picture suited to the specific situation and the decisions before them.
Brase warns that the “government’s biosurveillance plan is much more intrusive than the data collection currently being done by the Centers for Disease Control and Prevention (CDC).” It “talks about the need for the ‘examination of data from electronic medical records’ and calls for ‘cooperation among federal and non-federal stakeholders, including the scientific community and public and private healthcare providers … to achieve an efficient and reliable surveillance system.”
She added, “It’s very clear to us that really the government is moving toward real-time access, toward close collaboration of government and doctors for ready access to the electronic medical record and then to conduct research and analysis.”
“The scary truth is that this government surveillance program brings together several federal agencies—all who will be able to view, share, interpret and research the data collected through the system,” CCHF warns (pdf). “Cut through the jargon, and simply put, the government’s plan means that your medical records would be shared with government officials.”
CCHF urges you to speak out against the government’s biosurveillance plan to warehouse our health information. Or you can otherwise submit your public comments here.
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Darlene Storm (not her real name) is a freelance writer with a background in information technology and information security. It seems wise to keep an eye on new hacks and holes, to know what is possible and how vulnerable you might be. Most security news is about insecurity, hacking, cybersecurity and even privacy threats, bordering on scary. But when security is done right, it’s a beautiful thing…sexy even. Security is sexy.
This is a weblog of Darlene Storm. The opinions expressed are those of Darlene Storm and may not represent those of Computerworld.
blogs.computerworld.com, May 21, 2014