Who Should Own Your Medical Records?

*Who should own your medical records?* This seems like a straightforward, even simple question. The obvious answer is you. However, while you may have access to your medical records, you do not own them. Everyone else in the ecosystem has a claim on them, but you do not.

There are many reasons for this. First, the information systems and databases that your healthcare providers depend upon are where the records are located. Electronic Health Records (EHRs) have been seen for decades as the pathway to better and more efficient healthcare. Both of those today are assertions more than fact.

Second, the United States is a very litigious society, and every provider wants to be sure it has possession of the information about any treatment you received. This is reasonable, but for most Americans medical care is delivered through a loosely-coupled but unaligned network of individual providers. This results in an error prone and tedious process requiring multiple manual entries of the same data.

Third, the payment system is byzantine at best, with layers of intermediaries who review claims. Assuring payment is the major driver of the information systems the providers use, and your information is shared widely with your insurers.

Fourth, although medical information is protected under the Federal Health Insurance Portability and Accountability Act (HIPAA), “deidentified” data is not. Your data is being sold today whether you know it or not, and this is a major source of revenue for all providers. It is an open question whether any personal medical record can be truly deidentified, as we all have personal medical histories.

Fifth, the more complete your health record is, the more valuable it is. Thus, government and industry have cooperated around Fast Healthcare Interoperability Resources (FHIR pronounced “fire”), which are a set of standards to enable fast and efficient sharing of your data among your providers in the background. You really have no way of knowing who has your data. This sharing is invisible to you.

Sixth, the EHR industry is dominated by a few large players, especially Epic, who have little interest in portability. Indeed, vendor lock-in is the core strategy.

Reality is more complicated, however. We move. We change providers. We marry, divorce and have children. We have emergencies. We see specialists. We may choose to not disclose certain medical treatments to others…