As the newest member of the HIStalk team, I’m continually amazed at how Mr. H and Inga keep up with the constant barrage of press releases, announcements, news, information, and gossip that circulates around everything related to health information technology. I try not to feel bad when I realize an interesting tidbit has slipped past. Hopefully at HIMSS I can meet with Inga for a mind-meld to learn how she does it (and also to absorb some of her sartorial style.)
The issue at hand is relatively small potatoes in the overall federal funding bonanza – a $1.24 million contract awarded by ONC to APP Design, Inc. The goal of this contract is to help patients better understand choices regarding sharing of health data.
Specifying, building, and deploying a health information exchange have been a major part of my career for nearly half a decade. As a physician, the concept of HIE solves a myriad of problems. Consult letters don’t get lost in the mail; labs don’t wind up being double-ordered because the results aren’t in the chart; and medical misadventures can be prevented through timely sharing of pertinent clinical data.
As those of you who have been down this road know, it’s often unpaved and riddled with pot holes, poor lane markings, and uneven shoulders. For many of us, the road trip has been halted by the barrel monster called “Consent.” This is ironic because our patients think that simply by virtue of the fact that we’re documenting using computers, that all their providers are already fully sharing patient information. I’ve had patients yell at me in the exam room because I don’t have a particular piece of data on my screen.
As long as data sharing is within a physician group (especially if they are all under the same tax ID and within a single state) it seems relatively uncomplicated. But add non-employed physicians, independent providers, multiple health systems, and (heaven forbid) multiple states and you have a real mess on your hands.
When we sought to add providers outside our large employed physician group, the recommended consent language created by outside counsel was over five pages long and was totally unintelligible to the average person. Remember all those carefully crafted patient education handouts that have to be at the fifth-grade reading level so that patients can hopefully understand them? Think again. I have multiple graduate degrees and couldn’t follow this one.
Days of revising turned to weeks and then months as we struggled to get the consent document to even a single page. What felt like years of my life were sucked away on endless conference calls with our in-house attorneys and outside counsel. I jokingly proposed the following:
Check one below:
a) I want my physicians to share all information available so they can treat me the best way possible
b) I don’t want my physicians to share information and am aware this could possibly hurt or maybe even kill me
c) I don’t want to share my information because I am a drug seeker and am afraid you will no longer treat me if you find out
Not surprisingly, the attorneys didn’t find it funny. Most of my physician colleagues however found it hilarious.
Regardless, I’m looking forward to the outcomes of this exercise. The E-Consent trial being funded by ONC has several goals, including finding new ways to educate patients about data sharing as well as finding ways to move from paper consent to electronic consent.
The trial will take place at four sites in western New York that use the HEALTHeLINK exchange system. APP Design plans to create a new user interface to inform patients about data sharing and their choices, and also to document the patient’s permission. Looking at the timeline for deliverables, by now the project kickoff meeting should have occurred as well as creation of the project approach and work plan. APP Design will have 48 weeks to deploy a pilot, then an additional 32 weeks to evaluate patient understanding and satisfaction. Biweekly status meetings with ONC and monthly progress and financial reports will occur throughout the project.
Let’s hope they do well and avoid the potholes. May the construction barrels steer them to smooth pavement, slow gradual turns, and well-lighted parking.