Editor’s note: Dr. Hudis hosts the ASCO in Action Podcast, which focuses on policy and practice issues affecting providers and patients. An excerpt of a recent episode is shared below; it has been edited for length and clarity. Listen to the full podcast online or through iTunes or Google Play.
I am delighted to have as my guest the medical director of ASCO's CancerLinQ initiative, Dr. Robert Miller. CancerLinQ is a big-data technology initiative that collects and analyzes real-world cancer care data from multiple health care IT systems in order to deliver insights to physicians, improve the quality of patient care, and drive new research. Earlier this year, ASCO and CancerLinQ announced a very exciting collaboration that has the potential of bringing the oncology community one step closer to our goal of achieving interoperability amongst electronic health record systems. The project is called the Minimal Common Oncology Data Elements, or mCODE.
CH: We've all heard about the inability of electronic health record systems to share information with each other, and here is my favorite proverbial story: A patient is discharged from a big city emergency room after a month in the hospital. That hospital uses a single electronic record system and all the details are there. The patient is on their way home, develops chest pain, and ends up in a neighboring emergency room just a mile away. In most cases, how much of their record from the first hospital stay is transmittable to the second hospital?
RM: I think that's an important question and that's an example that we all have had experience with. To answer your question specifically, it's probably a small percentage, a minority of their record. There are certain laboratory values and other things that may make it across, but a lot of the important information is missing.
CH: Now that we've set up the problem, how is mCODE able to begin to address this issue?
RM: I think it's important to realize that while all medical care is complex, there's a certain level of complexity in oncology given the explosive growth in knowledge and new therapies. The underlying issue is that so many of the important parts of the cancer patient journey are just not entered into electronic records in a way that they can be easily retrieved, or the outcomes and adverse events are put in the electronic record in incompatible ways. This is because the electronic record today looks very much like the paper record of yore. And largely, this type of information is captured in what we call an unstructured note, or a document, that the clinician either dictates or just puts in text that tells a story. That's important to tell the story, but it's not easy for a computer to retrieve that information.
CH: Tell us a little bit about how mCODE came to be.
RM: The mCODE project started last year in 2018 and I will give credit to the leadership of Dr. Monica Bertagnolli, who was ASCO president at the time. ASCO convened a group of experts to try to create a minimal data standard to provide structured oncology data for electronic health records. The group created a data standard, or a data specification, saying these were the important data elements. They were open to public comments in January 2019, and ultimately were approved by the mCODE executive committee, and announced publicly on June 1, 2019.
CH: So, when you describe mCODE right now, it's clearly centering on some core set of data. Can you talk a little bit about which elements are being captured with mCODE?
RM: The mCODE data specification is designed around six different domains that describe the cancer patient journey: the patient, the disease, genomics, labs and vital signs, treatment, and the outcomes.
CH: What happens next? Can anybody decide they want to participate in mCODE, support its development, and contribute to it? Is it ultimately envisioned as a free add-on for any electronic record system, or would you have to pay to use it? What's going to happen here?
RM: The mCODE data specification is freely available on the mCODE website. This can be downloaded and there is no cost for mCODE. ASCO, MITRE, and others are looking to build a coalition of cancer centers, interested electronic health record vendor companies, and other technology companies to support this. We're in the coalition-building phase right now, in the sense that we recognize we also have to bring the oncology clinical community, and ultimately the research community, around to say that this is important, to say that we can't continue our current use of the electronic records and documentation tools. We must standardize it more. There will be a part for treating clinicians to play. There will be a bigger part, I believe, for vendors to play.
CH: Speaking of vendors, I have to say there are a lot of vendors in the United States. In fact, some people think that's part of the problem that we're facing. They have different platforms and they capture largely overlapping data, but not always identically coded. You and I will remember that 2 or so years ago, we found that there were more than 60 different ways that the term "white blood cell" was recorded, right?
RM: Right, right. White blood cell, smoking status—many ways to say it.
CH: It seems obvious to the outside world that recording data in a single standard way would lower the cost of interoperability and potentially improve quality of care. So that leads to the question, what do you think is the prospect of the vendors adopting these standards, and what can we do in ASCO to encourage that adoption?
RM: The electronic health record vendor community has been very supportive of this initiative and they have been a part of some of our early conversations. Most of them provided very robust comments. The bottom line is that they are interested in this. They have told us in our one-on-one conversations they want to contribute, they want to see this specification used. They seem willing to set aside competitive interests to do this because they recognize that this is the right thing to do. Fingers crossed, but I think we may be at a moment in time where there will be some alignment around this standard. But again, I'm optimistic that the EHR vendors are going to come along with this.
CH: Well, I think that's great. I'm very, very proud that ASCO has been able to play such a critical role in developing this, in supporting Dr. Bertagnolli's vision, which I think was critical to this being launched. I want to thank you for all—not just for this great interview and clarifying all this for our listeners, but also for the long hours you've put into this project already, leading this internally. It's going to be exciting to see where it goes.