Liberating Health(y) Surveillance

The American public has been shocked, shocked to learn the NSA has potentially tapped every phone and email account in the U.S. –  for national security.  Yet Facebook, Google and others have for years tracked your cat photos and car interiors, love affairs and esteemed nude self portraits, selling bits and bytes to shoe salesmen, casinos, mattress and hemorrhoid manufacturers. Sign up to discover your “Real Age” and answer hundreds of the most private questions will help you win special messages and discount packages from Big Pharma- indefinitely.

The president’s response to the furor – well, you can’t get security without violating privacy. And Congress approved it!  Plus there’s a secret Foreign Intelligence Security Court whose judges vet all wiretaps.  Of  1789 recent  requestsy one was turned down – with Congress  not allowed to look at the record.  So we know oversight is working.

Privacy is dead, people. Doornail dead.  Even medical privacy.

So it’s time to put all that surveillance to good use.  We need  to liberate health information.  It’s time information serve us, rather than our masters.

The Proposal

Set up an independent, national foundation to research all potential data in national electronic medical records (mandated for Medicare  in 2014).  The Foundation will be called “NICE” for National Institute of Comparative Effectiveness (the friendly Brits already have one.)  It will be able to access all health records to determine how well drugs, devices and treatments work. Really work.  Funding will come from government, corporations and other foundations.

Safeguards

No research will be allowed on any acts of gun violence. If a certain type of  handgun leads to the accidental shootings of hundreds of schoolchildren, we’ll make sure  no will ever know.  Without NRA backing this proposal will go nowhere.

Security checks on all researchers with access the data will be carried out by the FBI – with NRA notification. Unlike with the NSA and phone/email records, vetting will be continuing and continual.  No individual patients will be identified except by shifting numerical keys. Privacy will be assured.

Advantages

For the first time, Americans will get to know whether the drugs and therapies that cost them nearly $3 trillion a year actually succeed.  Instead of FDA studies comparing drugs in minimally ill  patients against useless placebos, where pharmaceuticals that appear 1% better than nothing still get approved, we’ll be able to track drug against drug and treatment against treatment – in real time and with real patients.  Quick, easy, and inexpensive trials will also be set up to see what treatments really work – and how much different treatments cost.

According to Ben Goldacre’s “Bad Pharma”, Americans presently pay about four times more than Britons for their drugs.  With even middling effectiveness the NICE surveillance program should  save hundreds of billions of dollars every year- and numberless lives. Cheap, effective treatments can be identified and disseminated – quickly.

The enormous savings can be allocated to lower the deficit, fund early education or whatever Congress deems important.

Disadvantages

The NICE Health Surveillance Project will require electronic medical records that are easy to use, practical, and simple to access.  This will discomfit many information technology companies.  They are  expecting a windfall of  tens of billions per year selling thousands of  competing software programs that can’t speak to each other, create impenetrable proprietary firewalls, waste hundreds of millions of man and woman-hours, provoke major health provider  breakdowns, and just plain  blow up. Ending this scandal will not be politically easy.  One way will be to have  NICE  require national bid contracts for a maximum of two to three electronic health systems – just as already happens in much of the rest of the world.

Obstacles to Roll Out

Some civil libertarians will be horrified to see national health records used to improve and simplify American health care.  If medical privacy is breached, what’s left?  They can rest assured that others will already have acces to this information.  According to published reports, the Chinese have already hacked the White House, the main political parties, defense manufacturers, banks, stock exchanges, utilities, water resources, university research departments and police units.  The Russians, Iranians, North Koreans and others are close behind.

Privacy no longer pays, but information illustrates and illuminates.  It’s time to liberate American health information – and make America Number One in health care once again.  We have nothing to lose but our illusions.

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