Privacy issues

But isn’t this scenario going to cause even more intrusion into our privacy? Well, yes, if this system were established and operated for us by a large, powerful entity such as a government body or any private, for-profit corporation.

(Microsoft has just made their opening move in this area with their unveiling of Health Vault, see www.healthvault.com., with the slogan “Be Well. Protected.” Although they assure privacy, the system they have developed does not seem to use an open standard data format. Do you really want all your data to be stored in a “vault” controlled by Microsoft?)

So, there is the two-edged sword: We can have this glorious public utility, but we’ll have to give up more privacy and/or control for it.

Not so fast, because my vision involves a way around that crucial problem and a way that turns this idea into a powerful political force that fuels innovation in medicine, increases health freedom, and leads to an overall improvement in the public health.

The extra empowering ingredients are heavy encryption along with a data format that is an open standard.

First, about heavy encryption: Think of a bank account to which you have online access. The money in your account is yours, and there is no dispute about that. You can access your accounts over the internet, but the privacy and encryption schemes have been worked out. You have all the convenience of electronic access from anywhere in the world without any loss of privacy or control. And, if you want someone else, a trusted accountant perhaps, to see your accounts, you can give them a password (and then change it later).

Likewise, your UHR contains your complete medical record, yet is encrypted with the same level of protection as your online banking system. 

You’ll have several passwords in your UHR, so you can set different information at different sensitivity levels. You might have your blood chemistry lab tests at level one whereas your genetic tests showing cancer propensity are at level five. Then you can choose what level of information access you are going to allow to whom. Maybe level one is for your insurance company, but nobody gets level five access (except you, of course).

Why is it so important for the patient to have control of his or her record?

In the medical industry, the power and access to information is all wacky. We have the insurance companies dictating to doctors what they consider to be acceptable practice. We have the pharmaceutical companies dominating the lobbyist arena and exerting undue influence with the FDA. The FDA … oh, don’t even get me started on the FDA.

Somewhere pretty far down in this complex network of power and flow of information is the lowly doctor, mostly just trying to do the right thing. And patients … well, they are not even represented here. It is as if the entire $1.5 trillion per year industry has been so busy making each other rich, they forgot who the customer is.

It is my contention that this scenario is not only the main reason for such high healthcare costs, but it also dramatically undermines the quality of care, while effectively putting a ball-and-chain on medical innovation.

The UHR, as I envision it, gives the patient the power of "information asymmetry." That is a term from economics meaning, roughly, that whoever has the better access to critical information is who will dominate the negotiation. So, by putting all the control of the UHR into the hands of patient, he or she becomes the most important decision maker in the industry again. I believe this will revolutionize medicine.

But there is a dark side too.

Soon, gathering extensive genetic information could be routine and the health benefits enormous. But, at the same time, patients will be far more worried about unfriendly bureaucrats peering at this information. And it is not just genetic information. This, I think, is a general trend in medical technology. The information is getting more powerful and more politically sensitive. Soon people will be asking "whose data is this anyway?" and this will be a political hot button.

So, we need to be very careful about what we allow to emerge as the standard for keeping medical records because, in the future, they will contain extremely sensitive data, but we’ll be stuck with the standard. With your health record, there is no basis for argument that anyone other than you should control it.

How does your data get into the UHR?

You’ll have your UHR at an internet location (hosted by your choice of hosts), and the data format is such that, at any point, you can pick up and move your UHR to some other hosting company. Using the existing system for addressing internet locations (which is inherently portable) and the existing open source approach to software development, the UHR system can become a true public utility, rather than another institutional program working for special interests. Costs will come down, freedom will increase, medical innovations will be stimulated, competition encouraged, and health improved.

Now that we’ve got the data holder, how does your data get put into it? For starters, you, of course, can add to your own record. And, when you interact with any service provider in the medical industry (hospital, doctor, specialist, analytical laboratory, pharmacy, etc.), they invariably produce data, and you currently have a right to that data. So, very soon the service providers will upload the data they create to your UHR. And they will do this because it will be understood as an issue of medical ethics to not do it!

A lot of pieces have to come together before the whole system becomes an accepted standard. But eventually—soon I think—a threshold point will be reached, and it will suddenly be unthinkable not to participate.

What next?

So is there anything to do but sit and wait? Yes, over the next few years, as more work is done in this area, don’t support any system that is not based on an open, transparent standard. That includes so far Microsoft and Google, but they could change under pressure. Insist on an open standard where the individual patient controls everything about his or her own universal health record. The last thing we need is for a big brother-ish health records system to become established as the standard.

Also, the next steps probably involve setting up a UHR Standards Committee and getting some lobbying support. So, if you know any philanthropists who would like to support this, send them my way … I’ll carry the banner.

And remember:

It's your body, it's your data … so own it!

Let me hear from you if you are excited about using a Universal Health Record. I welcome your ideas to help us launch a true open standard UHR.

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Articles of Interest from Smart Publications Health & Wellness Update

• Doctor Joseph Pizzorno Talks About Solutions Health Advisor
• How Can We Trust Clinical Studies When Scientists Have a Conflict of Interest?
• Lies and Deception: How the FDA Does Not Protect Your Best Interests.