Open access to our own data in diabetes care needed
As noted on the Diabetes Mine blog,
The fact is, a handful of manufacturers currently have a stronghold on our diabetes data. Their systems collect this vital health data for us, but are designed to withhold it so that we rely on their products exclusively to access it, share it, or analyze it (Tenderich, 2013).
Open access to our medical information is essential to caring effectively for our health, and to health literacy as a whole. We are moving to make medical records more accessible to patients, empowering all of us to monitor and question the effectiveness of healthcare in our lives. People who suffer from diabetes and utilize one of the many high-tech tools for managing this condition -- insulin pumps, etc. -- are tied to a particular product vendor for information about it. There is no way to access that tool's data to see if it is working well, as this information is owned by the company, not the patient. Tenderich is absolutely correct: there is something ethically wrong with this situation, and it needs to be changed. Biotech companies in this area can learn from this data, but the patient (test subject?) cannot.
The term open access is typically viewed as providing unrestricted access via the Web to peer-reviewed scholarly journal articles, theses, scholarly monographs and book chapters. Many in the research and library communities would like to see this principle applied to all government-funded research, or even all research conducted by corporations related to medicine and similar fields. A national open access policy needs to be enacted that requires companies to make such personal information available to the patient on demand, and not at the whim of the vendor.
If such a standard were enacted, what would it look like? In an age of identity theft, how would we protect patient privacy at the same time we make such data available? Tell us at the fireside!
(Thanks to Andrew Spong's "Patient" page on ScoopIt for finding this post!)
Tenderich, A. (January 31, 2013). The “Ethical Imperative” of Diabetes Interoperability