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.


Posted in: e-pts resources | medical records | policy issues




5 Responses to “Proposal for a health data system to support urgent cancer patients and wounded warriors”

  1. Proposal for a #health data system to support urgent #cancer patients and wounded warriors | #hcn #hcit #healthcare |

  2. ben says:

    “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.”

    The problem is that the data in federal health systems is relatively small for most people. And even worse, those systems are by and large WORSE than the commercial ones!

    • Ben, do you have anything constructive to say for the benefit of the people Denny’s proposal aims to serve?

      Forgive me if you’ve already answered this before, but have you yourself ever been in a desperate situation where you wanted to do everything you possibly could to save someone? Or just help them?

  3. ePatientDave says:

    New on Proposal for health data system to support urgent cancer pts & wounded warriors

  4. ben says:

    dave – I work for a national cancer center, so I am in that position all the time. I am just frustrated by the degree to which everyone seems to assume that infrastructure exists when in fact it doesn’t.

    I have to say I’m a little miffed at the implication of your question! :)

    If we want to address the real problems, then we have to address the underlying processes, many of which are broken or non-existent. This federal EHR is a perfect example. I have to report information to multiple governmental bodies, and currently the FDA, NIH and NCI all have different reporting requirements and cannot even agree upon shared terminologies. If we want to make patient-driven medicine a reality, then we have to start by solving the simple on-the-ground type problems that exist, rather than shooting for pie-in-the-sky solutions whose prerequisites haven’t even been met yet.

    I would love to see a situation where patient health information is available anywhere to any care giver, and where privacy concerns don’t trump health concerns, but in order to do that, fundamental changes must be made to law and regulation. We have to stop putting the cart before the horse. You won’t get real patient health knowledge until health information is available in a unified and transmittable format.

Leave a Reply