Keyose Blog - Personal Health Records

One of the founders of Keyose was interviewed by MarketIntellNow. Here is the transcription of the interview.

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Most people trust in the privacy of the medical records stored by the hospital. But as Britney Spears and Farrah Fawcett have learnt there is no 100% secure system even within your trusted hospital.

The med center fired more than a dozen employees and disciplined others, including six physicians, for unauthorized looks at Britney Spears’s medical records, the Los Angeles Times reported last month. Today, the paper reports a similar breach of privacy for Farrah Fawcett.

The Anonymous Personal Health Record could be a interesting tool for celebrities and for people with mental disorders.

As you can read in Keyose’s FAQ: Think about your health record at the hospital. You have no control over who accesses your data. It can be seen by doctors, nurses or clerks. Keyose offers you a better control over your health data; you can rest assured about that.

As reported by the Washington Post a new case of stolen laptop has toke place.
A government laptop computer containing sensitive medical information on 2,500 patients enrolled in a National Institutes of Health study was stolen in February, potentially exposing seven years’ worth of clinical trial data, including names, medical diagnoses and details of the patients’ heart scans. The information was not encrypted, in violation of the government’s data-security policy.
… “The shocking part here is we now have personally identifiable information — name and age — linked to clinical data,” said Leslie Harris…

Again and again… there is no 100% secure system. Privacy through anonymity was our leitmotif in keyose. And it will be.

As repoted in ksl.com Thousands of people are being cautioned to keep their eyes on their credit reports tonight. A laptop with names, Social Security numbers and personal health information was stolen from University Health Care in Salt Lake City.

In Keyose we know there is no 100% secure system. As a Doctor I understand that when talking about personal health information breaches a “one between a billion chance” is simply unacceptable.

For that reason, Keyose was designed to be a anonymous personal health record. A anonymous-non identifiable database in a stolen laptop would not be a privacy problem at all.

During the last days some big Health Plans in USA are releasing PHRs services. Vince Kuraitis analyses the reasons behind the failure on the adoption by the users of these services:

• Lack of Trust
• Lack of Access to Clinical Data
• Lack of Permission
• Lack of Convenience in Consumer Workflow

I read an interesting post from Gunther Eysenbach (a widely recognized academic on medical informatics) where he reminds his concerns about privacy and the presence of google ads in a online Personal Health Record.

“I see one particular privacy threat which I haven’t seen discussed anywhere. The privacy threat is created whenever a personal health record (or any other sort of dynamic, private information) is combined with Google Ads, because Google Ads are created by third parties, and Google Ads are keyword/context triggered. Any combination of Google Ads with any sort of personal health information spells a privacy disaster.
Why? Imagine I am a bad guy who wants to compile a database of people with the condition “Amyotrophic Lateral Sclerosis”. It is now a matter of five minutes to set up an ad at Google AdWords which is triggered by the keyword “Amyotrophic Lateral Sclerosis”. Google AdWords also lets me define a target site, so I could define health.google.com or any other online PHR site such as myPHRsite.com as the sole target site where the ad (context-triggered) should appear. Now, whenever a user on that site would review his personal health record with integrated Google Ads, my ad would be triggered only if the word “Amyotrophic Lateral Sclerosis” shows up in my record. The consumer of course does not know this and if the ad is something innocuous such as “Click here to receive a free gift basket” he might click on the ad and - bingo - all I (as the bad guy) have to do is to link to a questionnaire pretending to send a gift to the consumer, asking for his/her personal information - name, address etc. Thus, I have a list of people who have the keyword “Amyotrophic Lateral Sclerosis” showing up in their Personal Health Record.
Yes, it is that simple. ”

The first priority of Keyose is privacy and we agree with Eysenbach about the threath. In that sense we have decided to never include Adwords or Adsense advertising in Keyose service. We will never put our personal, our patients or our relatives health information in a service that provided AdSense in their website. You can trust us!

I am a medical doctor. I see patients every day. Including the Emergency Room where I work.

Because of that, I deeply understand, not only theoretically but as part of my daily experience that patient-physician relationship is the key for the quality of health-care.

A patient must trust his doctor. If there is no confidence, we lost a lot (patients and docs).

Saying that, privacy of data becomes a real importante issue. A patient that talks about his sexual activities, extramatrimonial affairs, fears, weakness, mental health… should be sure that the doctor will not reveal that information to third parties.

During thousands years physician have follow this hippocrates oath sencente: What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.

So at the moment I designed the keyose service, I have a very clear idea: privacy must be the priority number one!

Storing thousands of personal health records electronically has a big risk. What if someone unauthorized (a cracker for instance) access to the database? No matter how much money or effort you invest in the security of a system. There is no 100% secure system in the world. And the health information of thousand of people is very attractive to so many people (government, insurers, bank, private companies, criminals devoted to extortion…).

There are many companies entering the business of eHealth. Google Health, Microsoft HealthVault are just the two most known examples. As a medical doctor I am really concerned about the privacy of data. 90% of UK physicians and German doctors think like me.

Keyose was designed in such a way that no personal information is stored. We do not need your name, email or identity. And more importantly: We do not want it.

I would never put my personal, my patients or my relatives health information in a online database that contains the identity of the patients. You can trust me!

Dr. Julio Bonis

The Keyose team reads sometimes news that get us shocked. As this one, where is said that the Industry Ministry of Spain has spent 75 millions of euros (and will spend a total amount of 252 millions) in a interoperability system for clinical health records titled “Health Online”.

There are stil no real restuls that patients can use, after spending 75 millions, and if you read the source you will see it always talk about future.

The included actions in Health Online will allow the health care record use, the electronic prescription and telematic citations. In the other hand the interoperability between information systems of Autonomic Communities will be possible. The goal is to put the citizen in the center of the healthcare system, to reduce uncertainty in the medical decision making and to improve the access to relevant information for the provision of healthcare.

We, in Keyose, have always thought that before offering a solution you have to spend time to understand the problem. And that only when you understand it you must offer the simplest solution, that will be the more efficient.

Of course, the understanding of the problem is within those that suffer the problem. For that reason Keyose is a tool that came out the mind of a medical doctor that works every day treating patients. And for that reason we give the highest importance to the opinions and suggestions that the patients using Keyose provide us every day.

Moreover, our engineer is obsessed with simplicity and is an expert in usability. For him, the challenge is not about using the lastest technology, but the simplest one able to solve the problem.

250 millions of euros are far enough to many millions of liters of Arab tea (our favourite drink when our team meet to produce new ideas).

Our goal, as the Ministry is: to put the citizen in the center of the healthcare system, to reduce uncertainty in the medical decision making and to improve the access to relevant information for the provision of healthcare.

And we are proud of say that we have biuld a tool that real people is using all over the world, in 5 months of work.

And, by the way, drinking much less teas in the process.