Declare Your Rights to YOUR Health Data

A small group of individuals including Adam Bosworth, Jamie Heywood, David C. Kibbe, Gilles Frydman, Alan Greene, and Sarah Greene, began drafting the Declaration and reaching out to others for feedback and improvement. The refined Bill is available at this site and is summarized at the end of this posting A Declaration of Health Data Rights

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A Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

1. Have the right to our own health data
   
   
2. Have the right to know the source of each health data element
   
   
3. 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
   
   
4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

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What a great concept founded on the same principles from a couple of hundred years ago as part of the formation history of this country. It is the end of the secret code and hidden meanings in patients notes (think GOMER, Turf, Bounce and many others). Something that was highlighted in the ground breaking book by Samuel Shem; "The House of God" that was released in 1978 and was one of the first to reveal some of the struggles in the medical field and coping mechanisms that included coded abbreviations describing patients in less than complimentary terms. But all of that is a good thing and the full sharing of notes and information with the rightful owner has some added value - things that are wrong can be corrected. e-PatinetDave generated a big swell of interest when he highlighted the junk that exists in your medical records as he started to review his own making the point that we must get our data, manage it and review it. In fact as I said before - we need to become our own Primary Care Physician. Dave deBronkhart needless to say is an early supporter and in his post on the declaration makes the point:

These rights are as inalienable as the right to life itself.
Whose life depends on the data's accuracy, its availability?
Whose data is it, anyway?

I could not agree more and am reminded of a discussion I had three times prior to the birth of each of my children. I had the privilege of delivering my kids but took no clinical responsibility. The hurdle and message I had to get through to the obstetrician (OBGYN here) and midwife was that there was possibly only one other person in the room with bigger vested interest in the successful outcome - that would be my wife. So they had to know and believe that I would not get in the way or hinder their ability to deliver care in the event that medical intervention was required. Fortunately in all three cases we had normal and successful deliveries but had that not been the case I was ready to step aside at a moments notice. The same principle applies to my medical record - I want it to be correct and am more likely to have the time and knowledge to review and correct any mistakes.

There is of course a fly in the ointment here - one of knowledge of terminology (something that technology and support infrastructure may help along with review in conjunction with experienced clinical professionals). BTW - I see an emerging role for a patient supporter who has additional knowledge and training to help with this. Interestingly the Medical Editor has much of the knowledge necessary to help process and understand this data and this might well become one of the future roles of these knowledge workers. But there is also the issue of pre-existing medical condition coverage and the general mess that exists in the US related to patients inability to get coverage when they have a conditions - and in some cases being "turfed" out of the insurance plan after they are diagnosed with a condition. This creates an incentive to lie about conditions and conceal diagnostic information. The answer here of course is to fix the insurance problem and create an all encompassing affordable insurance system that spreads risk across the whole population not just the healthy. There is no incentive in the United Kingdom's NHS system to conceal clinical data for fear of lack of coverage since the system treats all.

As someone put it on the site - you can bet that Steve Jobs insisted on getting his Medical Records in Digital form and in a form that he could review and transfer to other doctors. I bet he got it too. But this is about everyone else's rights and our need for easy access to our information.

Go endorse these rights here or add a tweet with the HashTag #myHealthData and become a fan of the FaceBook Page that is here