The Oncology Research Information Exchange Network (ORIEN) has grown to an alliance of 18 cancer centers, powered by the informatics platform of M2GEN, a company that spun out of Florida-based Moffitt Cancer Center
For cancer researchers, there is definitely power in numbers. For example, the Oncology Research Information Exchange Network (ORIEN)has grown to an alliance of 18 cancer centers, powered by the informatics platform of M2GEN, a company that spun out of Florida-based Moffitt Cancer Center. The network is allowing researchers to share data and collaborate more seamlessly across institutions.
In a recent interview, Healthcare Innovation spoke to Stephen Edge, M.D., director of the Clinical Oncology Pathways program at the Roswell Park Comprehensive Cancer Center in Buffalo, N.Y., and a member of the executive committee of ORIEN.
HCI: Could you describe the value of being a member of ORIEN to a cancer center like Roswell Park?
Edge: The value of ORIEN in general is the ability to combine both the clinical and genomic information as well as the scientific expertise of cancer centers across the nation to develop understandings of cancer biology. ORIEN is one of a number of similar organizations that are trying to do the same kind of thing. The cancer centers participating in ORIEN submit tissue that’s sequenced and germline data and couple that with high-quality clinical data. Then those data are available for collaborative research. The data are also used in a completely anonymized fashion with researchers, both ORIEN members and for-profit organizations.
HCI: Could you talk about ORIEN’s origins?
Edge: ORIEN started with work at the Moffitt Cancer Center eight or nine years ago and grew to include Ohio State and then they grew it over the ensuing years, and we now have 18 member institutions and the organization is looking to add more cancer center members. A number of centers have recently expressed interest in joining, and it’s ideal not only for the large NCI-designated cancer centers, but it’s also a good opportunity for other academic and community-based centers. There are a lot of very large centers that have very robust programs that might not be NCI-designated or university-based systems, so it’s a way for their clinicians to get involved in this kind of scientific endeavor.
HCI: Are there challenges around standardizing the data that are pulled from electronic health records?
Edge: The data are pulled as much as they can be from structured information, but quite frankly, as with all these kinds of data sets, there has to be human curation, and human curation is a code word for human abstraction, meaning somebody goes into the chart and abstracts the data. We still do rely some on human abstraction of data to assure that we have high-quality data. But one of the hallmarks of the ORIEN program is that we not only have the semantic information from the tumor, we have germline data, and we have highly curated and audited clinical data associated with those samples and that includes follow-up information, particularly on survival and recurrence. That information can be hard to get, particularly if somebody moves to another place or a patient moves to another center.
HCI: I understand that the process by which the patients are enrolled is called a Total Cancer Care (TCC) protocol, which standardizes the process of enrollment across 18 centers. Why is that standardization in enrollment important and how was that protocol developed?
Edge: It grew out of the program originally at Moffitt and then Ohio State, and it’s a means by which people who have cancer can agree to enroll and allow their clinical information and any associated biological information to be used. There are around 325,000 people who have enrolled in the TCC. A subset of those records actually have tumor tissue that’s available for sequencing. It is a huge, huge data set. I remember meeting a couple of years ago with one of our scientists who was interested in soft tissue sarcomas, a relatively rare tumor. I don’t know the exact number, but the Cancer Genome Atlas had a few hundred cases. ORIEN already had 1,000. So even for some uncommon cancers, there’s a power in having these 18 centers collaborate.
HCI: Does that help people focused on studying specific types of cancer collaborate across organizations because they can share common data and maybe develop projects together around that data?
Edge: Absolutely. One of the hallmarks of the ORIEN group is the intermember projects, where a scientist at one of the member institutions proposes a study. The scientific review committee at ORIEN reviews that and may comment on it to help improve it. And then it can be available to scientists from across the network. So rather than having just your own center’s data, you will have data with curated clinical information on larger numbers of people.
HCI: Does ORIEN also accelerate the development of clinical trials in partnership with pharmaceutical companies?
Edge: Yes. It is still never a fast process. We’d all like it to be much faster. But again, one of the hallmarks of ORIEN is the ability to do that work, and we’ve recognized that we have areas where we can improve those efficiencies. The executive committee and the steering committee, in collaboration with the management at M2GEN, are looking at ways to markedly streamline that function.
HCI: Getting back to what I asked before about data standards, I’ve interviewed people at MITRE who are helping to develop a common data model in oncology called mCODE. Is that something that might help your processes?
Edge: It might, but mCODE would have to be fully available and used by various EMRs. The “M” in mCODE stands for minimal. It’s the minimal data set required to have a standardized ontology record, but it’s by no means the full complete data set of things that people might be interested in in terms of cancer. As yet, mCODE is not widely adopted and in use in health records around the country. But standardization of clinical data is going to be critical, not only for patient care, but also for clinical and scientific research. It’s unfortunate that our industry is far behind other industries in standardization. Even competing banks generally use the same language to speak to each other. Whereas if you have Cerner or Allscripts or Epic, you can’t talk to each other, or even quite frankly, different instances of any one of those EMRs sometimes can’t even talk to each other. They are all getting better at allowing that kind of interoperability, but the progress is slow.
HCI: Anything else about ORIEN you would want to stress to our readers?
Edge: I think it’s really a testament to people with cancer that 325,000 people have signed a consent form that allows their data to be used in this way. And yes, that’s a big effort on the part of the cancer centers that have done this. But it’s really a testament to people’s willingness to allow their data to be used in this altruistic fashion. The advances that may or may not come from the use of their data will be years away from when they were actually treated. What ORIEN has done is leverage the large patient populations of all of these centers to be available for these kinds of research. Now, ORIEN and M2GEN are looking to see how they can speed the return of that information and with appropriate legal and human subject oversight protections, return some of that information back to people. I think that’s a feel-good story about the huge numbers of people who are participating in this research.
Source: https://www.hcinnovationgroup.com/clinical-it/learning-health-systems-research/article/21284707/qa-dr-stephen-edge-on-the-power-of-networking-in-cancer-research