Search all of the Society for Participatory Medicine website:Search
Home » e-Patient resources » Proposal for a health data system to support urgent cancer patients and wounded warriors

Denny Porter is executive-in-residence at the HIMSS Foundation, Institute for e-Health Policy. I met him in Washington last month at the eHealth Initiative’s annual conference, where I was on a panel. Great guy, and I love this proposal: a Federal Health Records Gateway to rapidly assemble all the health data about an urgently ill person from all the different Federal health data systems.

This column first appeared in Government Health IT on January 20, with the title “Plain Speaking on Health Data Access.”

For years a crisis has been brewing for many people who have become tangled up in a cyber-age web where healthcare records are being generated and maintained across an ever-broadening spectrum of healthcare delivery systems.

Two particular categories of patient are at the forefront of this crisis: those that have been diagnosed and told they have a terminal disease; and our country’s severely wounded military service members who are forced to transition from the Department of Defense to the Department of Veterans Affairs and out into the civilian healthcare system.

Both sets of patients face a similar, urgent and daunting task. They are literally fighting for their lives while being forced to get their hands on every shred and electron of their medical histories. By searching the Internet you can see that all across the country, patients and families are caught up in this crisis. By the time these patients are at this stage of treatment, every minute, hour and day counts.

It’s plain that our healthcare “system” needs to focus on these patients and respond quickly by providing a complete medical history that gives each of them a fighting chance to live.

I believe that there is much that can be done to remedy this crisis with the right leadership and initiative. First, the federal government should ensure that we have access to our personal health data held in federal agency databases via a single, secure, portal on the emerging Nationwide Health Information Network (NHIN). By enhancing the transparency of government-held clinical and health claims data, a federal health record (FHR) gateway would support already established Presidential and congressional initiatives in the area of patient-centered health.

Creating a FHR gateway pilot would be a relatively simple approach that would focus on addressing the needs of our most desperate patients. Although initially focused on data held by specific federal government agencies so as to reduce complexity, a pilot would rapidly yield prototypes and lessons-learned that could be leveraged in other agencies and jurisdictions.

Ending or averting this crisis of access to medical history for our most needy patients should be a national policy priority. With the right leadership and focus, projects like this could lead the way in how our nation responds to this critical challenge.