TR: What about the public-health benefits? Systems that house large quantities of patient data could enable new types of research studies.

KB: Absolutely, that’s something I get really excited about. It will totally break open our knowledge base. For example, I have been diagnosed with low-pressure glaucoma, which is fairly unusual. No one knows what causes it. I would love to be able to search the system for anyone with this form of glaucoma and start to look for similarities.

I’d love to be able to do that too, except it would potentially violate the privacy rights of all of those individuals if they hadn’t agreed to specifically let you see their records. If they were to elect to share their information to help others find similarities as she suggested, that would be fine, but we should not assume everyone will do that, and we would have to have a process for this election upon diagnosis.

The first issue to cover is whether the Internet will be used as the medium of record transfer, if point-to-point connections will be established using the phone system or another network, or if an entirely new network will be created to facilitate these transfers, like the financial network. This article assumes the first option, especially since citizens will supposedly have access to the information online.  A separate network would be a much better solution, but would cost much more to deploy.

Why does it matter?

What are the non-privacy-related implications of Internet-accessible health records vs. them being on paper in a drawer? Most of them have to do with hacking, bribery and blackmail. Let’s say someone pays the Database Administrator of the health system $1,000 to change your health records to indicate you saw the doctor about gonorrhea (or they simply use a stolen doctor’s account, or they’re a hacker, etc. etc.). Now, they give you a call, letting you know that they’ll tell your wife unless you pay $10,000. Blackmail is a huge possibility. This is possible now, but only by those who work with patient information physically.

One effect of the centralized hackable database of health records would be the illegal issuance of prescriptions for drugs like Valium, Oxycontin, etc. for a fee. All that would have to happen is a falsified entry into the database, and you can go down to the store and pick up your bottle. I don’t necessarily oppose loosening rules on prescription drugs, but creating a new electronic black market for health record falsification could prove dangerous. After considering this possibility further, it would be possible to remove prescriptions from the system as well, possibly endangering lives.

So we should just use paper?  Come on!

Now, I’m not necessarily against digitizing health records. If each citizen, on the initialization of their record, was given a private key, and all the records were encrypted with the matched public key, and kept in a large central database, that would be fine. Yet, there are problems with this too since in an emergency, the health records wouldn’t be accessible unless the patient was conscious and able to type their passphrase. Therefore, there would have to be an override of some sort, which would destroy the security of the system. This override could be a “health safety deposit box” provided to patients optionally by a private corporation, which would contain their passphrase for emergency use, and would be authorized for query by the living will of the patient. This is the only possible way I can see for centralized health records to be implemented securely, but it seems to be unworkable at the moment.

So what about decentralization, which is what we currently have with paper and with the SAFEHealth system. If the records were kept by the doctor, and encrypted with both his and the patient’s public keys (for patient confidentiality), that would be secure. Of course, assuming the medium of transfer is the Internet, the decryption and changes would have to be done on a standalone computer to prevent the cleartext from being retrievable from the Internet, and any transfer to another office would involve re-encrypting the files with the other doctor’s public key, transferring of the result to an Internet-enabled machine, and the reverse process on the other end to read the records. Because this is painful and time-consuming, doctors and administrative assistants (I like ’secretaries’ better, but whatever) would obviously skirt the security here. And human involvement to decrypt would still be needed in emergencies. I’ve just sent an email to SAFEHealth asking for more information about their system:

Hello,
I’m interested in learning more about how your system works at a deeply technical level. Could you please point me to an explanation of exactly how records are stored, accessed, encrypted, decrypted, which keys are used, who generates those keys, and what network protocols are used to access the information? Thanks.

The only workable solution seems to be the patient signing away the rights of the government to make his/her health records potentially public information. We’ve seen various scandals involving medical industry employees already, like Octomom. Many people would sign this, especially if they went to different doctors all the time. Many people don’t care about their medical records being public, so they’d do it for convenience. But at a process for removal from the system at any time should be available for all patients. A system like this might complicate seeking diagnosis for things like alcoholism, opiate addiction, and mental health for fear that one’s employer might find out about the condition. Any patient should be able to elect to use paper instead, and be responsible for the transfer of his/her medical records to medical professionals for treatment.

But it’s for your own good!

A dangerous assumption is that we must force the patient to allow doctors access to their medical records for his/her own good. The fourth amendment exists to prevent this very thing from happening. It could also be argued that random searches of homes would discover meth labs and would save children, but it is unacceptable in this country because of our natural right to privacy. One way to assure access in case of emergency for those who have privacy concerns is by using a living will to allow access to the paper records assuming they’re filed somewhere accessible. Private companies could provide medical record storage facilities for profit, and could be called in case of emergency need of the records (or as I described before, the passphrase to unlock the records).

If one thinks this article is scathing to the whole idea of digital health records, he/she should have a look at this one.  While some of the same concerns and many more are brought up, different fears are addressed.  The corruption of government employees would also be a danger (which I touched on with the DBA bribe example earlier), but some of the later examples (the police officer having access) are a little unfounded and paranoid.

Microsoft and Google both have products for storing large amounts of health information.  When stories like this are appearing all the time, that really concerns me.  I’ll finish up with a good quote from this article.

“Ironically, HIPAA creates felony penalties if a doctor or hospital abuses the data, but there’s absolutely no penalties for a Microsoft or a Google because they’re not covered by the law,” Brailer said. “It’s nothing that they’re doing wrong. It just shows you the state of mind of Congress when that rule was written 10 years ago, because they never ever envisioned there would be online services managing health information.

“I think that’s a very high priority, because one consequence of the President-elect ramping up people’s attention to this is that people will come back to a lot of their fundamental worries about the protection of their health information,” Brailer said.

I look forward to comments and suggestions for this post.  This is definitely a hot-button issue at the moment, and any constructive criticism will be appreciated, and probably responded to.

Update 4/10/2009

So, Lawrence Garber, Principal Investigator for SAFE Health, and I have had a great email thread going on the security details of their system.  It sounds pretty good, but there are still concerns.  Apparently, they use HTTPS over a VPN, which isn’t a bad solution for network traffic security.  Yet, the last response I received from him indicated the following:

There’s no need or requirement to encrypt the data on the server because it’s within our physically, password-protected, and firewall secured datacenter. However passwords and credentials are encrypted.

So, again, we’re back to the unhackable datacenter with unencrypted data idea, which, from personal experience, isn’t a good idea.

American

We are free from enslavement by the government, and each other (well, unless we screw up, in which case the government can enslave us in prison).  We embrace free enterprise, and demonize central planning in business and industry.  We are free to speak and to own weapons (mostly – see Free Speech Zones and the soon-to-be-brought-back-permanently Assault Weapons Ban).  We have freedom of movement within our borders, and many other individual rights that I will not reiterate here.

Un-American

It would be un-American to allow people to enslave other people for any reason.  This includes creating any individual right to any service provided by another individual.  The only exception to this seems to be the right to a fair trial, which binds a judge and possibly a jury to try an individual, yet the right to have others dictate one’s fate isn’t a right that allows the individual to hold power over others, but rather the opposite.  This seems to be necessary for a free society.  It is un-American to prohibit free speech, free movement between territories of the United States, and thanks to Heller, ownership of weapons by law-abiding citizens.  It is un-American to legislate social norms, which prohibit freedom of expression, or to prohibit any free speech that does not direct to incite and is not likely to incite imminent lawless action, search or seize private property without a warrant based on probable cause, etc. etc. Bill of Rights verbatim.

Validity

Yet, is being un-American part of being American?  How paradoxical would that be?  Congress can amend the Constitution, and the proposition of such an action is not un-American.  Does the Declaration of Independence not give us all the right to dissent against a government destructive to Life, Liberty, and the Pursuit of Happiness?

That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, — That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.

So, if this statement is “American,” the un-American equivalent would be to never question your government, no matter how destructive it becomes.  The interesting thing is that questioning the actions of the government (eg. war) seems to be one of the things that is popularly called un-American, or un-patriotic.

A patriot is someone who thinks, feels or voices expressions of patriotism, support for their country.

There is a difference between supporting your country and supporting your government.  Supporting your country has to do with creating the maximum opportunity and protection (including protection of individual rights) for your fellow American, whoever he/she happens to be.  Supporting your government is simply going along with whatever your leaders have chosen to do, even if that happens to be harming other Americans, which is called patriotism, but is more like fanatical nationalism.  Those who are truly un-patriotic express a desire for failure of other Americans, or the infringement of their rights.  Those who are truly un-American reject the existence of unalienable rights to Life, Liberty, and the Pursuit of Happiness, but may be pro-government and nationalist at the same time.  This all depends on the current policies of those in power.  Think about that next time you hear these pejoratives.

Suddenly radio playlists, MTV, and A&R guys aren’t
the all-powerful gatekeepers anymore. At long last the music industry
is becoming a democracy.

In our governmental systems, we elect representatives to make decisions for us, sending them to Washington to write bills, oppose bills, pass bills, or veto bills. We ideally find candidates who will make similar decisions to those we ourselves would make. We elect them in a process called democracy (unless it’s a presidential election, in which case the popular vote only determines a winner-takes-all vote for the state, allowing the electoral votes to originate from one party or another). In government, a direct legislative rule by the people is as dangerous as a direct legislative rule by any tyrant. In a country where we preach equal treatment of any minority, we cannot have raw majority rule, where fear of the majority silences all those who might oppose it out of fear of rejection, blasphemy, or outright violence.

As I’ve been reading various books, an idea keeps popping up.

Suddenly radio playlists, MTV, and A&R guys aren’t
the all-powerful gatekeepers anymore. At long last the music industry
is becoming a democracy.

In our governmental systems, we elect representatives to make decisions for us, sending them to Washington to write bills, oppose bills, pass bills, or veto bills. We ideally find candidates who will make similar decisions to those we ourselves would make. We elect them in a process called democracy (unless it’s a presidential election, in which case the popular vote only determines a winner-takes-all vote for the state, allowing the electoral votes to originate from one party or another). In government, a direct legislative rule by the people is as dangerous as a direct legislative rule by any tyrant. In a country where we preach equal treatment of any minority, we cannot have raw majority rule, where fear of the majority silences all those who might oppose it out of fear of rejection, blasphemy, or outright violence.

This, of course, leads to problems, as the majority would:

Withdraw from Iraq

“Three in 10 voters favour the war, while 68 per cent oppose it. ”

Legalize gay marriage or civil unions

“Most Americans continue to think there should be some legal recognition of gay and lesbian couples, and 30 percent say same-sex couples should be allowed to marry”

Representative government also has many boons, since free trade would now be outlawed under a pure democracy, which of course could mean “Free Trade Agreements,” which are oxymoronic, but the article says these people fear “trade with other nations.” So, what do we do about this? I think keeping a republican form of government is central to our freedoms and the protection of minorites.

While my opinion of a pure democracy determining the law of the land, I am convinced that it is viable in many situations, particularly those where the decisions being made by the majority are based solely on the quality of a range of products. One example is art.

Art

Art is produced by an artist in order to promote ideas, encourage thought, make a political statement, inspire people, enjoy oneself, or simply to make a profit. When one observes a piece of art, he/she can generally come to a conclusion about how much they like it. Promotion of art based on a democratic system is perfectly acceptable since the minorities are simply manufacturers of art that most people find unattractive and those who like unattractive art. The result of unpopular art is the encouragement of artists to improve themselves. Yet, minorities can also form when a new type of art is being introduced, the majority still on the bandwagon of the last big thing. The fact that art has eras tells us that most people are not so attached to one era that they cannot begin to enjoy another one equally, therefore not polarizing them like political issues do. You’re either pro-life or pro-choice, but you can enjoy country and reggae music at the same time.

Summary

In essence, when one can only take sides on an issue, pure democracy and referenda are evil and should be avoided. Yet, when one can use democracy to promote things they find attractive – when promotion of any member of the category in question does not polarize the promoter – it is serving its purpose. When a choice by the majority does not prevent the minority from expressing themselves in any way they please, democracy is appropriate. Democratic input is definitely warranted in politics, and should have an influence on the representatives who supposedly study all the facts before making decisions (see the Read the Bills Act), but popular opinion should not have complete influence on decision makers.

They should fix this. It’s been there since 1954. It bothers me.