Declaration of Health Data Rights: Aux Barricades!
June 22, 2009 by Craig Stoltz
And so it has come to this: A declaration of human rights about . . .health information technology.
A group of thinkers, leaders and potentates in the patient-centric wing of the Health 2.0 movement, gathered under the banner HealthDataRights.org, has hammered out the following declaration:
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. All people:
- Have the right to their 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 their individual health data, without delay, at minimal or no cost. If data exist in computable form, they must be made available in that form, without delay, at minimal or no cost.
- Have the right to share their health data with others as they 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.
[Interest declared: I know a lot of these folks from the Health2.0 world, and was approached to endorse the statement and to blog about it at 9:00 p.m. on the 22nd day of June in the year of our lord 2009. I agreed because, well, I agree.]
This is important and timely stuff.
At a moment when vast amounts of federal cash are being spent on Health IT [HIT] in service of health care reform, it’s important to have the interests of patients plainly and publicly declared.
Why?
The most visible and active “stakeholders” in discussions about HIT so far have been–stop me if you’ve heard this one before–commercially self-interested players who may not [or, to be fair, may] have patient rights regarding what happens with the “I” part of HIT top-of-mind.
These HIT stakeholders include big IT vendors, insurance companies, hospital conglomerates, physician groups, trade associations, venture capitalists and, not least, drug and device makers.
They all have the usual “access” to the the HIT policy making process via lobbyists, contacts on the inside, campaign contributions and swank public affairs firms with expensive furniture in their reception areas and lots of friends in the media.
And so yes, it’s essential to ensure patients are represented in the midst of all this–and to declare patients have access to, knowledge about and [some] control over their personal health information.
And, if necessary, to call the People to arms to demand it.
Aux barricades, mes patients pareils!
Though I think they use Twitter for that these days.
I just want to say, of all the reading I’ve done about this issue in newspapers and blogs and tweets, this is the coolest hit-the-nail-on-the-head post.
I’ve learned recently that if someone’s invited to testify at a government hearing, they can’t get compensated for time off work. So guess what: the only people who show up much are the people in the business! No great surprise there.
But this is where social media come in. And here we are. Holla.
[...] It took me right back to Craig Stoltz’s excellent post last night about the new Declaration of Health Data Rights: Declaration of Health Data Rights: Aux Barricades! [...]
on a related note, not many people are aware that medical information they disclose to insurance companies may end up in the files of the Medical Information Bureau which may then be shared with other insurance companies. think of the MIB as the Equifax of medical information…a bureau that has your “health score.” I’m doing OK but am not so sure I want so much easy access made available to my health score. how does this match up against ownership of one’s health data?
PQResident,
Thanks for bringing up the MIB. Last summer Consumers Union had a blog post about a woman who underwent major financial harm because of an error in her medical record (a doctor miscoded something) and the error propagated to the MIB.
I wrote about it and got contacted by an MIB representative. We had an extensive email exchange about whether anyone, anywhere is responsible for the accuracy of information in the MIB ; he wouldn’t answer.
Then I asked (since he’s an attorney) who might be liable for consequences of such errors, and he wouldn’t answer that, either. My follow-up post is here.
So I’d say yeah, think of the MIB as Equifax without recourse for consequences of errors.
The MIB is a membership organization whose intent is to shield insurers against fraud or omissions. Unfortunately it’s totally irresponsible (see above - not responsible for errors) and one-sided. The only thing the guy would say is that if you find an error you can dispute it.
But see my post for the slimy details about how hard it is to tell where erroneous data came from. That’s why it’s important that the Declaration says we have the right to know where a statement came from.
[...] I’ve argued before, things like the Declaration are necessary because patients don’t really have access [...]