My Body My Data

Medical databases are one of the huge trends in IT right now, and there are a lot of people looking at how to make national, integrated personal medical information databases a reality. There are also a lot of people looking at the special requirements for accuracy and privacy when building such databases. I like this person’s comments, from a patient’s perspective, on the importance of sharing ownership of the records with the patient. The comments were triggered by someone commenting that they signed up for Google Health and found it to be a combination of inaccurate and with troubling omissions – basically, a health record that would likely be worse than nothing. The system is still in beta, but it is troubling to see partial data being provided by hospitals/pharmacies, as compared to simply declining to provide information unless it is complete. Even if this is improved, as it likely would be before it left beta and hopefully before any doctor relied on it as a source of medical information, the conversation about participation in the data collection and maintenance is a good one. It is troubling that any doctor would be wary of a patient seeing their own lab results, though perhaps they would like to be able to ensure that they are presented with enough context to be meaningful. But I think we have to insist that information about ourselves and our health is our information, and just as we have a right to see what is in our credit report and who has been looking at it, and a process for correcting it if necessary, we have a right to the same control over our health records. Given the nature of the information, I think we also need a system more effective than the current credit history system, and we ought to have it in place before these systems are widely adopted.