Keyose Blog - Personal Health Records

Advance health care directives are instructions given by an individual specifying what should be done for his or her health in case he or she is no longer able to make decisions. These are legal instruments that are usually witnessed or notarized.

These directives are very important in case you (or someone under your care) are unconscious or have an advanced dementia. It is stored in a legal or offical repository (notarized). It uses to include the five wishes:

1. Which person you want to make health care decisions for you when you can’t make them.
2. The kind of medical treatment you want or don’t want.
3. How comfortable you want to be.
4. How you want people to treat you.
5. What you want your loved ones to know.

A user have suggested us that Keyose could be a good place to store your  advance directives. Of course as Keyose is anonymous its legal value on those questions is close to “zero”. But as a doctor I think it could be a good idea to do the following:

- include your advance directives in your Keyose record (but never include identificative information about you in the record… that is very important for your privacy!)

- include some brief information about how to obtain the legal document or the telephone number of your representative in your Keyose card. It will help the healthcare profesionals to obtain that key information faster.

Of course be aware of the privacy threats of your Keyose card in this issue. In case someone steals your Keyose card containing personal information about you (or in a wallet with other personal identificative documents) he will be able to access to the public area of your personal health record, that is accesible with your public password (very important in case you are unconscious), but never to your private one protected by your private password that only you know and is not printed in your card.

One of my favourite PHR services (outside Keyose ) is patientslikeme.org. I logged in two months ago with a fake profile (remember: “I will never store my medical information in a online database that contains personal indentification” (and your email is one). After testing the tool, I have tried to remove my account and delete all that fake data. And know what? I have not found the way to do this!

My reflection after this incident is: “Your privacy is very important but also your right to remove your data”.

In Keyose you can remove your account easily by clicking on “Remove my record”. All your data will be removed from our database automatically.

Any activity or service needs funding to keep running. Personal Health Records are not exception. The question here is who will pay for my PHR. The answer is you.

You could pay in three different ways: by paying directly to the PHR service you choose, by paying someone who will decide which PHR you will have access to and also by paying with your health data (very valuable data from a marketing perspective).

The last one is seem by some people as the perfect solution. You do not need money to access to the service. But you have to be conscious that you are paying in fact. You pay with your health data. If you do not care  third parties having access to your personal data and trading with it (now or in the future) this is a good solution for you.

The second limits your consumer freedom, as someone else (your insurance or your government) will make the decision for you. Of course you are paying the sevice with your money or taxes. But will be a PHR not direclty chose by you. If you do not like the service, you cannot change to other PHR easily. This drives to a monopolistic marketplace where innovation is restrained.

The first is the most common for other services in our societies. You select the service more convenient for you and you pay for it.

In the next month Keyose will release a new version of our PHR service. New functionalities will be available for free and others (extra ones) will be available for premium users. By this “freemium” model we hope to be self-sustainable. Our vision is to be a anonymous personal health record.Our compromise is to provide a PHR where nobody trades with your health data.

Keep alert, the official release is coming soon!

We use to visit other personal health records. Sometimes you find good ideas. Sometimes you find bad ones. The last are probably the most useful. As a medical doctor I take special interest in the “privacy policy”of these services.

Today I found a PHR with this sentence in its “privacy policy” document:

We transfer information about you if “PHR Company, LLC”  is acquired by or merged with another company. In this event, “PHR Company, LLC” will notify you before information about you is transferred and becomes subject to a different privacy policy.

Notice that they say “notify” but not “ask for permission”.

So, what does it means?. It really means that your data could be transfered to a third party in case your original PHR is “acquired” by another company… maybe a company you work for…  Like in a mortage, you can be pretty sure about the current conditions but not so sure about the conditions 10 years later.

The BIG question here is: why all those new PHR companies are asking you to provide a name, ZIP code or email? Do they need those data to provide you a service? Or are they planning to monetize that information in the future?

 Confessors will not ask your name. Why do we?