Give us our damn data!

I recently read a CNN article and a blog post on the topic of patient access to their own health data:

http://www.cnn.com/2010/HEALTH/01/14/medical.records/index.html?hpt=Sbin

http://e-patients.net/archives/2009/12/what-part-of-give-us-our-damn-data-do-you-not-understand.html

Both articles reminded my of an interview I did in 20007 with a cancer patient using Grand River’s oncology portal about which I wrote in a blog posting nearly a year ago:

https://ehealthmusings.wordpress.com/2009/03/10/do-people-want-to-share-personal-health-information/

Like several people quote in the article and blog posting, the person I interviewed emphatically stated several times during our conversation that she felt very strongly that “they [her medical records] are my records and I feel that I should be able to have immediate access to them when I want.”  Further, she asserted that she should be able to offer access to these records to whoever might be involved in any aspect of her care.  Clearly the cry “Give us our damn data” resonates with this patient.

As healthcare organizations increasing digitize their medical records, I suggest that the debate regarding access to these records will get more heated.  People are already conditioned by the banks to access and and even download their financial information.  Despite legitimate claims that medical information is more complex and, at times, difficult for the layperson to decipher, I believe that people will feel that information related to their health is theirs to do with as they see fit and will get more vocal in their demands to be able to do so.  What do you think?  Should patients have unrestricted access (subject to appropriate privacy controls) to their own health / medical data?  If not, what restrictions should we place on this access?

Mike

One response to “Give us our damn data!

  1. Some aspects of the issue are clear in Canada…according to the law the patient owns their own record. Seems simple, but as with anything legal the devil is the application and the detail. At what point does a physician or other service provider have any rights when it comes to providing access to the data? For the most part, we as patients, trust care providers to keep us alive and well, so why do we have issues with our data?

    I believe in common sense on this matter. Patients should have a reasonable right to access their data, with the caveat that they have to pay for the cost of retrieving this data (whether it be in paper or electronic form). Seems reasonable to me as long as this is done in a cost recovery only format. This seems to be the common practice for many already in the industry. Patients do have rights, and if they can figure out what the lab report/clinical notes mean then more power to them. 🙂

    Just don’t expect the doctor or care provider to have to foot the cost of retrieving or accessing this data for you. Canadians need to start understanding that nothing is “free” in our current system.

    Mark

    Mark

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