Patients (and their doctors) need HIE

I have been fortunate to work in the field of medical informatics for more than 20 years. During this time, the US market went from less than 5% electronic records to above 90%. This was accomplished via $30 billion dollars of unprecedented financial incentives from the US government.

Despite this investment, patients and families continue to experience information deficits and are at risk for preventable medical errors. I experience these deficits every day in my clinical practice of geriatric rehabilitation where I routinely use 3-4 different electronic records each day to take care of fragile Medicare age patients. This continues to surprise and disturb.

In 2007, I founded a sustainable community HIE (health information exchange) which has been interconnected to 45 different HIEs for more than 2 years, forming the Patient-Centered Data Home. This is a scaleable partial solution.

During the past few months, prominent hospitals and EHR vendor executives have worked to block the next logical progression for information sharing -- standardized API (application programming interfaces) to their systems. They argue that this will increase risk and compromise privacy and security.

The Patient-Centered Data Home is a natural experiment that has improved information flows for 177 million patients without reducing privacy and security. I would argue that this work has greatly improved data governance with the participating hospitals as they collaborate to engineer ongoing improvements to this network of networks. This work has been accomplished in collaboration with many EHR vendors.

I would encourage all of us to continue our journey to reduce the risk of incomplete and inaccurate information for our patients and families. A recent article from Health Affairs by Savage et al. provides a detailed analysis of this topic:

A key component of the ONC’s proposed rule was the requirement that a vendor of a certified EHR must allow any app a patient chooses to make a data call on a read-only, standard specification application programming interface (API) so that the patient could automatically and efficiently get a copy of their own health data.