February 09, 2012|Categories:
So far in this blog series, I have talked about “the good” in health care IT. For example, EHR interoperability—when it exists—is really good. I’ve also shared some of “the bad,” like data entry and data access in light of a 400-page paper chart. Today’s entry focuses on “the promise” of health care information technology. That is, the potential of HIT to act as a foundational service in which to share research and protocols across providers, to benefit all patients, no matter where they are or who they know.
Here goes …
I had a really good cry just after I was diagnosed with Stage 4 colon cancer. The tears were laced with fear—I was scared. I cried for me, my wife and our kids—I couldn’t think of anyone else during the first 12 hours. I felt better, temporarily, as if the tears washed away a bit of the fear. But then, by the following morning, the fear was back. I was less scared of the diagnosis, and more anxious about the unknown process of how to cure it. Or whether it was even curable.
When the poking, prodding and questioning finally stopped and my diagnosis was launched into the cosmos, my wife and I had to figure out who my doctor would actually be. More accurately, we had to figure out how to figure out who my doctor would be. Also, we obviously had to determine what my treatment plan would look like. In short, we needed a route back to health.
This, I soon came to realize, is where connections who possess both extreme compassion and access to leading edge research and physicians intersected to create my health care HOV lane—a channel in the vast highway system of health care options that the patient firmly believes gives them the best shot at arriving at a safe and healthy destination. And like an HOV lane (high occupancy vehicle for the uninitiated, a smooth-sailing highway lane), if I could find a way into it, I could get back to health faster than the rest of the traffic because I had a few friends on board with me.
Stay with me on the HOV lane. The analogy may not hold for everyone, but let me explain what I mean and how it relates to a larger problem in health care. This is a solvable issue greater than just me trying to overcome my diagnosis and get back to wellness.
First, we had a connection who exhibited an immense amount of compassion for us. A few short hours after awakening the day after my diagnosis, a distant family friend (the mother of my wife’s sister’s college roommate… I did say distant) and a veteran leader at the hospital, walked into my room. She advised us to meet with the medical and surgical oncology teams that I’ve already referenced (Dr. R and Dr. T). She is a strong woman and I took her words as gospel the second I met her.
It was clear that, in advance of her visit, she had pulled my chart, seen that I was 39 years old, read about the state of my disease and decided she was going to help. In an unexpected turn of events, I went from crying over the fear of “figuring out how to figure out how to get a doctor” to being assigned to two of the hospital’s leading physicians—both of whom had already discussed a very progressive chemotherapy and surgical strategy to get me back to the “Kingdom of the Well.”
And with that… I was officially in my version of health care’s HOV lane. I was comfortable with the team and the very aggressive plan of attack. We were on our way.
While unbelievably grateful for the connections and compassion exhibited by our physician friend, I thought a lot about the other 20+ million current cancer patients who may lack proximity or any connection to a leading edge cancer institution.
This led me to another set of questions: Do patients who receive care at more remote or less research-oriented hospitals question whether they’re getting the best care possible? Further, could these doubts somehow compromise the efficacy of their treatment? Further yet, do huge swaths of patients miss the opportunity to follow what leading research deems the most effective protocols for care?
I have to assume the answer to at least one of these questions is “yes,” at least some of the time, for some patients. But it doesn’t have to be that way.
This is where HIT companies, in collaboration with the world’s finest research institutions, have an amazing opportunity—and maybe a responsibility—to pave the way for cancer patients (and their families) on their often harrowing journey to beat this ravaging disease.
If you watched any of the NFL playoff games, you saw several large corporations advertising that their “super computers” are being used to cure cancer. The commercials show huge 3D servers and scientists viewing holographic images of DNA—all with an eye toward unpacking the riddle that is cancer.
Having all that information makes for impressive advertising but it needs to be deployed to huge numbers of physicians in order to see demonstrable results—such as people staying healthy.
Here’s what I mean. With any diagnosis, limitless amounts of information can be gathered and analyzed to guide treatment. Many of these data—tumor markers, for example—guide oncologists toward specific treatment protocols. However, when you couple clinical research advances and protocols with the ever-expanding vastness of personalized data for a cancer patient, I see an emerging disconnect. This disconnect relates to the ability to readily identify relevant information from these massive data structures and surface those data into the hands of the oncologist… and then, directly into the treatment protocol of the patient.
The collaboration between HIT companies and research institutions needs to enable promulgation of cutting edge research using patient-specific markers. It needs to find its way into the hands of the physician.
In perfect alignment, the match of patient-specific markers against leading edge treatment protocols would be used to create situational awareness for a specific patient as a standard part of the care process. It’s possible; we’re just not there yet. But like my HOV lane, I can see there’s a road to get us there.
I don’t believe this information or the situational awareness to guide care should come for free. Massive amounts of funding go into aspects such as research advancement and universal information access.
And there is most certainly a market for it.
Leading institutions are already beginning to market their care protocols, but merging these protocols seamlessly with the care process must happen to ensure a reliable entrance onto an HOV lane, not just from a research institiution, but from any physician’s office in the country. It can and should be done, in an economically rational way.
When we reach this point as an industry, and a nation, it will be possible for any cancer patient to be comforted in knowing that a region, nation or world’s worth of clinical research is behind him or her—even if location or a family connection doesn’t enable them to align with the most prestigious hospitals in the world.
It took collaboration on my care team—my fellow passengers in that HOV lane—to get me to where I am today. Someday soon that same collaboration and the connection and compassion coupled with access to leading edge research and physicians, will be writ large across health information technology. And the HOV lane will be wide enough for everyone. It needs to be.