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I'm joining the party a day or two late, and am supporting:

• 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

So, my first reaction: This is obvious stuff, right?  Say what you will about The People's Republic of Massachusetts, local law requires prompt provision of medical records to patients at nominal cost, and in the vast majority of cases, the rules are followed and everyone's happy.  In my own little world here in Boston, MA, The Hub of the Universe, I've never had a problem getting health data -- or pathology slides, or anything else -- released to me or shared with other clinicians when needed.  But, then, I suppose I'm an outlier: my physician is part of a totally wired multispecialty group practice, which has been wired for years and years; and I'm both an industry guy and a lawyer, so I know how to speak up when I need something, and perhaps folks are more apt to listen.  (Reminds me of the semi-apocryphal story of a classmate of mine who saw the "law student" stamp across the top of his medical chart at Mass. General years ago.)

Upon reflection, I realized that not everyone -- whether in Massachusetts or elsewhere -- has the same ease of access, and while the declaration is sort of a no-brainer, it is important to put it out there, and I'm happy to join the folks who got this thing going, including Adam Bosworth, David Kibbe, Jamie Heywood and Gilles Frydman (forgive me for leaving other names off this short list).  I discussed the Declaration with Gilles Frydman, who agreed that it is just a first step, but a critically important one to take while the national dialogue is focused on electronic health records.

Additional steps down the path will have to include other common-sense guarantees that are already enacted into law here and there, including guarantees concerning the rights of patients to obtain teat results through their physicians or otherwise, the ability of patients to correct errors in their records (so we don't have easily-accessible garbage), as well as easy access to interoperable electronic health records and non-tethered personal health records.

There are good reasons why some physician notes in some patient records should not be shared with patients or family members (a subject for another day), but this Declaration is focused on data -- not free-text notes -- so those notes would not be covered.

What other rights along these lines would you like to see guaranteed?

David Harlow
The Harlow Group LLC
Health Care Law and Consulting

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