I recently read an article that raised the question of who owns your health data. By ownership, I am referring to who has the power to either access or give someone access to your medical information. There are many interested parties in knowing all about you for valid reasons:
- Your PCP wants to know what care you have received so s/he can effectively manage your health
- Your specialists want to know your medical history so they can rule out contra-indications and assess for conditions that could affect the effectiveness of your treatment plan
- Your insurance providers want to know the health status of their covered patients so they can effectively calculate the risk of their covered members
- Your state and federal governments want to know population level data so they can effectively manage public health and policy initiatives
Those are a lot of players interested in what is recorded about you in EHRs around the country. Do each of those players need to know everything about you? When we visit a physician to deal with a problem, we are putting our trust in them to make medical decisions for us. Certainly they may need to know your medical history. Therefore, we could say that every physician we interact with should have the right to access your medical record. I don’t know about you, but as a patient that sounds scary. A dermatologist doesn’t need to know about a patient’s erectile dysfunction to remove a wart!
I am currently working on HIE and ACO integrations and have been grappling with the technical challenges of seamlessly integrating information from Medicare’s Opt-Out program and from the ACO’s opt out program with the care management programs that the PCPs have signed up for. This got me thinking, if I have the right to withhold medical information from my physicians, can I hold them responsible for missing a diagnosis when they did not have a complete medical history or medication list? Providers certainly don’t think so! While we haven’t found it yet, there is a balance between sharing enough information for everyone to do their jobs, and the patient taking responsibility for managing their medical record. At the core of the ACO model is the concept of a PCMH which focuses on the physician-patient relationship as a way for both of them to manage the patient’s health together. If we as patients want to have ownership of our medical identity yet still provide the necessary information for everyone to do their jobs, then it is time for us patients to become more involved with all the members of our health management team and to understand the implications of both sharing and withholding information. As a data analyst, I know most organizations share healthcare data securely with only those who need it and data is not being abused. As a consumer, I also know that nobody predicted that FICO scores would be used by insurers and employers. We need to know who is using our data for what purposes and voice our concerns to our healthcare providers and lawmakers.There are many benefits to sharing data openly with ER docs, ACOs, state HIEs, etc. that I am sure you can imagine. So if you are choosing to withhold your information, I urge you to review the implications of withholding information and the responsibility it places on you with your PCP.
As a childhood hero of mine was once told: “with great power, comes great responsibility!”