Lincoln Nadauld, Intermountain Healthcare: Interview Q&A

Q: What were the motivations to create the Oncology Precision Network (OPeN)?

A: As we began implementing precision oncology at our hospitals and clinics throughout Intermountain Healthcare, we quickly began to realize that there are certain variants or mutations in a patient’s tumor that we may not have seen before. We don’t always know how relevant they are or what kinds of responses certain drugs will provide with those variants in place. It’s this problem where each patient is so well defined. It’s almost like every case is an n=1 case. We realized that the way to overcome this is to aggregate big data sets. The data at our own institution, while large, is not sufficiently large enough to overcome the n=1 problem. We thought if we could partner with other institutions, we would be able to overcome this problem. If I come across a rare variant in a particular tumor, or even a common variant but I don’t know how it will respond to certain medications, I can search a common database and understand what my colleagues at other intuitions are seeing and how their patients with the same mutations are responding to certain medications. It’s an aggregation of large data that allows us to treat our patients better. At the end of the day the primary motivation was to find ways to give us better outcomes for our patients, to treat our patients in a smarter way and to advance precision oncology more rapidly.

Q: OPeN is a very unique relationship between Intermountain Healthcare, Stanford Cancer Institute, Providence Health & Services, and Syapse. What are the goals and benefits to each collaborator?

A: The health delivery institutions in this partnership derive tremendous benefit from this collaborative effort. We all get to expand our data base and therefore our knowledge. It makes us better at treating our individual patients and giving them better outcomes.

Q: OPeN’s intent is to tap into communities across the country that are not treated by major cancer centers. How will you achieve this and what are some specifics about the approach you take to reach this goal?

A: There are patients all over the country who have genomic testing performed and receive targeted therapies. It’s hard to disseminate the outcomes of those patients from providers. That communication doesn’t always happen. OPeN’s goal is to understand how patients are getting testing, what kinds of drugs they are prescribed and how they respond to those treatments. We are aggregating that data by bringing on board additional institutions as they develop genomic testing and as they get involved in precision oncology. We are achieving our goal by adding additional intuitions to the OPeN network. We are in active conversation with three very large hospital networks who would like to participate, contribute their data and continue to grow the database. We have a long list of independent hospitals, integrated delivery networks, academic medical centers that all want to participate in OPeN. They all have the same vision that large data sets aggregated together can make us all better at treating patients with precision oncology.

Q: How much data is expected to be generated via this initiative – by when and who will have access to this data?

A: We already have tens of thousands of patient cases in the network. We anticipate over a hundred thousand cases in 2017. We anticipate that number will continue to grow rapidly over the next several years as additional intuitions begin to participate and contribute their data. The data can be viewed and accessed by contributing member intuitions. We have an agreement in place that clearly outlines the guidelines and uses of the data. We’re really excited about the discoveries that we believe will come from these large data sets.

Q: Why are large-scale cancer genomics data sharing and collaboration efforts needed and what are the biggest challenges of sharing genomics data?

A: These kinds of efforts are needed so that we can learn more rapidly. One of the biggest challenges is that we’re learning from one patient at a time just from our own institution. If we could disseminate our efforts and learn what our colleagues at Stanford or Providence are learning, then our scale at which we learn grows. We can learn a lot more quickly. Another challenge in sharing genomics data is simply the term “data sharing.” That is so foreign in healthcare! For decades healthcare institutions have been reluctant, appropriately so, to share data with each other. Unfortunately, in the past there may have been a sense of competition between healthcare networks. Even more than that, there is some anxiety around sharing patient data. There are many regulations around data sharing and we’re fully compliant with all of those regulations. We don’t share any identifiable data. You could never look in our database and determine which patient it came from. It’s all completely DE identified and protected. Another major challenge is having an IT platform that can accomplish this. That’s what Syapse provides. All of the institutions currently in the network are already using Syapse to aggregate and store their genomics data. Syapse removes the electronic walls of our individual data bases and forms one large database.

Q: Is there anything else you would like to share about OPeN with the reader base?

A: The number one message from OPeN is that we are non-for-profit healthcare institutions that want to contribute and share data with a singular goal, improve outcomes for patients. We are not sharing or selling this data to pharma or Datatec. This collaboration is solely for the purpose of improving outcomes for patients. Our singular interest is the patient!