Keyose Blog - Personal Health Records

A interesting research of the Connecting for Health Initiative reveals that there is a great interest in Personal Health Records as Keyose. However, privacy is the main concern (obviously) and prevents people from using these kind of services despite their potential benefits.

- Four in 5 U.S. adults believe that online PHRs would be beneficial in managing their health and health care.
- Nearly half the public expresses some interest in using one.
- Yet less than 3 percent of the general adult population has an electronic PHR today.
- Among those not interested, concern for privacy is the most frequently cited reason why.

As a family doctor privacy is also my main concern. And that is the main goal of Keyose.com: protecting the patient’s privacy by providing a totally anonymous personal health record system!

Yesterday one of our patients decided to become the first Gold member of Keyose. For just 2,91€ per month (around 4,5 USA $) this patient will have access to 1Gb of images storage, unlimited use of our health-track tools and the possibility of asking up to 3 personalized questions to a family physician in an anonymous way.

As Keyose is anonymous we don’t know the identity of our first Gold Member, but we would like to welcome him/her to our service. We hope to be useful to you, and to the 1100 patients that are using our Free service.

As a physicians led project, in Keyose our main compromise is with the confidentiality of your data.  We must follow the Geneve declaration of the World Medical Association that says: “I will respect the secrets that are confided in me, even after the patient has died.”

Although some capital venture has suggested us to monetize the information we store in our database (by selling aggregated data to third parties, as other PHR projects are probably planning to do) we have rejected that possibility, as incompatible with our total commitment with patients (we like to say patients and not just users).

We have updated our Privacy policy to state clearly our position:

Keyose will never provide third parties with any data, individualized or aggregated without the consent of each individual user. Each potential data transfer to third parties will require a new informed consent signature.

In the future Keyose could generate aggregated statistics based in data provided by users that had signed a specific informed consent. This statistics could be useful to allow Keyose users to compare their clinical advances with the rest of users. Also, this aggregated statistics could be provided to the general public and biomedical researchers for public interest, again after the sign of a specific informed consent for that purpose. However Keyose will never charge for or monetize these aggregated statistics.

After listening the requirements and suggestions of our users, we are glad to release the version 1.0 of keyose service. We keep the core of Keyose (the easy to use so useful brief medical record) but adding a lot of new functionalities:

• You can upload medical images (radiology tests, photos, digitalized documents…)
• You can track at home (or by mobile phone) a new set of conditions (your blood pressure for hypertension, your sugar blood for diabetes and your weight and body mass index to prevent obesity or track the growth of your children)
• You can even pose any medical question to a family physician (Dr Julio Bonis) in an anonymous way using your account

We inaugurate two new plans for our special patients, so by the moment you can choose to have:

• Free Keyose Account: For every one! Basic PHR and upload of 2 medical images.
• Premium Keyose Account (for only 0,92€ per month): For those with an intensive use of Keyose or some chronic conditions. The free privileges and also 50 Mb of medical images and access to our exclusive health-tracking tools (hypertension, diabetes and obesity).
• Gold Keyose Account (for only 2,92€ per month): For those who value the human touch!. The premium privileges and 1Gb of medical images storage. Acces to the health-tracking tools and most importantly the possibility of posing medical questions anonymously to a family physician.

An interesting post in The Health Care Blog:

And while Google trotted out some great enterprise partners last week for its announcement, I didn’t hear any consumer voices or testimonials on how Google Health will fulfill an unmet need. To me, PHRs and electronic medical records remain an industry-driven vision, not a consumer-driven one — focused on efficiency and reducing costs. It seems we’ve lost sight of whether the consumer really desires and is willing to participate in these services. What are the circumstances for using a PHR and do the benefits outweigh the perceived risks?

Currently the PHRs are answering the IT and health-care industries questions. Will the patients start to ask their own questions? That is Web 2.0 all about!

Last week we have reach the 1001 objective. A thousand and one patients have filled a register in Keyose. To celebrate next week we will release the version 1.0 of Keyose Personal Health Record. This new version will allow to upload medical images or track your hypertension, weight and diabetes.

As we do not ask for personal indentification there is no way to know the origin of our users, but based on the statistics of visits we estimate that by the moment we help to manage their personal health records to around 630 patients from Spain, 120 from USA, 40 from Argentina, 20 from Mexico, 15 from Peru, 15 from France, 10 from Brazil, 10 from Chile, 10 from UK, 10 from Japan and some patients from other countries as Netherlands, Colombia, Germany, Canada, Malasya, India, China, Portugal, Dominican Republic, Hungary, Singapure, Algeria, Taiwan, South Africa, New Zeland, Angola and even Bangla Desh!

Stay online, news are coming!

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?