Who owns that X-ray of your shoulder made last year? If it exists as a real print-out, you probably have it at home – because they gave it to you with the comment that it belongs to you anyway. Now, how about the digital version? Is your M.D. up-to-date and uses an X-ray machine that directly produces a dicom? Was this given to you, perhaps in the form of a DVD? Did you also receive the report the doctor made when assessing your shoulder clinically using also the X-ray? What are the chances that you will have this information easily available next time you are in a different hospital and need treatment to the same shoulder?
Your medical data belong to you. You pay for its generation and you are the source of it. Your data as a whole are very valuable. However the vast majority of lands in storage, stowed away, difficult to access for the individual and not available for research and the development of better diagnostic and therapeutic procedures. By sharing our health data (see my last post share or perish) medical science would be able to gain more insight and thus improve prevention, treatment, and healing. Since it is your data in the first place, why not be rewarded for sharing your property with researchers, the government or a corporation?
What we need are individual electronic medical accounts for each person – not unlike a bank account. You are (probably) the only person who can access your money and send it to somewhere or someone else. If you arrive at a different hospital and the M.D. needs the X-ray and the notes from your private physician or investigator then you grant her access to your medical account – generally or specifically for the data she needs.
But how can we ensure that our data is safe and will only be used in circumstances of which we approve? The answer is simple and very Swiss. The entity governing your data has to be a cooperative – owned by its users –, located in Switzerland, with its stringent privacy regulations and its globally trusted way of governance.
The first ever health platform of this type has been established recently and is called healthbank. It is cooperative and strives for the goals sketched above.
Does it need to be global? Yes, because to get enough data for meaningful research as many people as possible need to participate. Read in the next post to learn why we need such large numbers!
