It had to happen. After weeks of following the discussion “meaningful use” it became obvious that the patient should be part of the equation. And it did happen. Yesterday “A Declaration of Health Data Rights” was published. And the whole US health IT blog world is buzzing about ownership.
These are the points of the Declaration:
- Have the right to our own health data
- Have the right to know the source of each health data element
- Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
- Have the right to share our health data with others as we see fit
The Declaration has already received support from Google and Microsoft.
Of course, ICMCC wholeheartedly endorses this Declaration. And we are happy that this “movement” has finally started in the USA.
Why? Because as an international foundation we have written a general guideline on Patient Record Access in 2007, which a couple of months ago arrived at the office of Dr. Chan, DG of the WHO, thanks to Sir Liam Donaldson. It is only with the support of national movements like the one now happening in the USA and via their influence on the national representations to the WHO that we can make the right of access into an international binding right. For in our view, the right of access and its consequences should be for all citizens wherever on this globe.
I would also like to point you to the presentation of Prof. G. Kutukdjian during the 2008 ICMCC event on this subject, covering the position of the UNESCO and the Council of Europe.
We invite you to contact us and to bring this guideline to the attention to your WHO national representation.
You can find the (downloadable) ICMCC Guideline on Patient Record Access here.
Lodewijk Bos
President ICMCC
Lodewijk,
thanks for pointing me to the guidelines you wrote in 2007. I was unaware of their existence and will add them to my database of important documents.
The Declaration of Health Data Rights has a different goal, though. We didn’t write it as a document to change doctors mindset but to start engaging all US health citizens in a national conversation about health data rights and obligations. The document is not meant as the end of a process but, on the contrary, just as the beginning.
I hope the conversation will involve many points of view because we need to hear them to build consensus in the end. Let’s have as many input as possible to improve upon the first published version.
In the meantime, please come and endorse the rights and the declaration
Gilles,
We both have the same goal in mind, to give the patient the rights to his own data. When we wrote the WHO guideline in 2007 there was hardly any country having an EHR, so we could not start it like a bottom-up movement.
Therefore we decided to produce this guideline to the WHO to try to establish a worldwide recognised right for each and every patient/citizen.
I agree with you:
“It is only with the support of national movements like the one now happening in the USA and via their influence on the national representations to the WHO that we can make the right of access into an international binding right.”
But this Declaration of Health Data Rights should include some details and «meaningful content».
However that’s a great initiative and I endorse it expecting that it is only the beginning of the real revolution through eHealth.