Syapse's Jonathan Hirsch on Barriers, Coups, and Hope in Precision Medicine

In part 2 of this week’s HCA News C-Suite Q&A Syapse Founder and President Jonathan Hirsch continued our conversation about precision medicine and starting up in health IT by detailing his company’s expanding efforts and what he, as a person, gets out of the experience.

In the course of the interview, Hirsch touched on barriers to information sharing, contrasting his views with those of Greg Simon, who he worked with on the Cancer Moonshot. He also spoke to what he thinks the world of cancer care will look like when precision medicine has fully, universally been embraced.

Part 1 of the interview can be read here.

You’re almost a decade in with the company, so I want to ask about…let’s not call them accomplishments. Is there a moment, or are there moments, that you can point to and say it felt like you pulled off a coup, of sorts?

I’ll give you one answer, which may seem a little bit flippant but I do mean it seriously: every single time that we get a health system live on what we do, it is an achievement. This is such a complicated domain that we operate in that these things are achievements. Getting physicians live on software, getting all the data standardized and aggregated, those are achievements, and they are very difficult to achieve. Whether it’s convincing a health system to work with you, actually getting them onboarded, changing the behavior of oncologists, those are what I’d call the smaller but important victories, the ones you expect to have.

From a larger standpoint, one of the things that we achieved alongside our partner health systems and that I still marvel at: we really did empower the first study of clinical utility and cost impact of precision oncology, and that was published last year with InterMountain Healthcare as the lead on that. That was a major coup, because no one before had really studied the clinical and cost impacts of precision medicine in a routine care environment. There had been some limited studies in academic environments looking at impact on decision making, or impact on outcomes, but that was one that I still marvel at. It’s not the be-all-and-end-all study, but the fact that we were involved in the first effort in that space, and that’s getting a ton of attention from payers and health systems across the country, it’s a major effort.

The second one is in the realm of the smaller, daily things that happen. Every time that a patient has a treatment decision changed because of us, I still look at that and I’m amazed by it.

Obviously any company is looking to grow in terms of clients, knowledge, what have you. Are you looking to widen your sphere at all, though?

One of the debates that we constantly have is about expansion beyond oncology. We’ve done a few exploratory exercises on that, and our conclusion right now is that oncology is just such a powerful area that we need to be focused on it. Maybe some other areas like cardiovascular and neuro health will mature over the next few years, but right now our focus is squarely in oncology

Where we’re expanding our aperture is going both earlier and later into the workflow and helping to tackle challenges in a physician’s workflow through ecosystem relationships. Specifically, what I mean is that there’s no point in doing precision medicine unless you can change the patient’s treatment, right? We’re in this to improve patient care, and if all you’re doing is getting a test ordered and returning the results, you aren’t necessarily impacting the decisions or patient outcomes. One of the areas that we focus on is eliminating barriers to physicians practicing precision medicine, like external dependencies such as drug access.

One of the things that we’re launching now is a patient financial assistance automation. Essentially, when a physician uses our software and identifies a specialty drug that they want to put a patient on in response to a molecular test, we can automatically see through the software if there’s a financial assistance program for that drug. We can streamline the process of determining eligibility, getting the patient enrolled, and tracking them through the process. One of the biggest reasons why cancer patients are either not taking their meds or not going on them in the first place is because of the financial toxicity, the high copays and out-of-pockets We’re doing our part on that end to reduce the burden on the patient and reduce the burden of the physician by bringing financial assistance into the workflow.

That’s one example of what’s going to be a whole range of ecosystem relationships to make precision medicine a simple reality of cancer care.

I am going to shift gears a little bit, maybe use one of those horrifying buzzwords we talked about. I was just editing an interview we did with Greg Simon and thinking about what he says in that interview and also said again at CONVERGE about silos. I wanted to ask you, is there really was a sort of antiquated, hording nature within health systems when it comes to data, and do you see that as a barrier to your work as well?

I would characterize it a little bit differently. I don’t think it’s any secret that I worked with him on the Moonshot data sharing efforts, and Greg and I have talked about this quite extensively over the years.

It’s not necessarily that health systems are hording, or want to horde. There are just very specific barriers in place that prevent them from more extensive sharing. Certainly there are technological barriers, I don’t want to beat a dead horse on that one. There is a legal barrier, or at least a perceived legal barrier. If you’re a health system and you think that there is a lack of clarity in HIPAA in terms of what you’re permitted to share, when you’re permitted to share it, how the data needs to be de-identified…if you think there’ a lack of clarity there, and then you see all these health systems who are getting fined massive amounts of money for any breach of patient data, you as a health system will be very conservative. Forget about the monetary penalty, you’re going to end up on the front page of the newspaper.

It’s not for nefarious reasons, it’s for perfectly rational reasons. They’re putting up barriers to sharing data because they don’t want to be held liable for someone’s interpretation of the regulations. There are specific things that the government should be doing to help this. For most health systems it has little to do with their desire to horde, it’s really around a legal barrier.

Separately, there are some health systems that will put up business barriers. I think mostly academic medical centers and major cancer centers that may think that they have some proprietary knowledge that they don’t want to get out there so they can maintain their attractiveness as a referral center.

You may have some of that going on, and some small community groups and labs think that their data is a valuable commodity to be monetized, but by and large I would say it’s not really anything to do with large health systems not wanting to share, it’s more of a compliance, regulatory and legal standpoint of making that work while still protecting their risk profile.

What can be done to assuage those companies who create those barriers on their own?

This is actually something we’ve been focused on for a while. We’re in the direct midst of some of these data sharing contracts and legal items, and I wrote an op-ed on this about two weeks ago in the Washington Post.

Specifically, Health and Human Services and ONC and that crew will routinely issue clarifications to HIPAA and HITECH. For example, about a year and 4 months ago they issued a clarification that stated that the patient owns their lab results, and that lab results include genetic text data. The patient has the right to the full test results. No new law was passed, but that clarification set the tone for what we’re seeing now in terms of patients taking control over their genetic test result data.

Similarly, years ago, it was unclear whether cloud computing was acceptable from a HIPAA and HITECH standpoint. Did the cloud vendor have to execute a business associate agreement, or did they not? It was, I think, in early 2014 that HHS issued clarification stating that cloud computing was OK from a HIPAA standpoint, but that cloud computing vendors were business associates under HIPAA and had to sign BAAs. That opened up a whole field for companies like ours being able to use cloud computing.

These are actually fairly straightforward issues, where if the government wanted to solve it they could. I do ‘t know how much progress we’re going to make on it with the current administration, but these are tractable issues we can solve.

Avoiding “cancer is cured” as an outcome, let’s talk about an ideal world where Syapse and companies like it have been able to fully realize their mission. So short of a complete cure for the disease, what does that world look like?

We’re trying to be realistic, and one of the things I don’t like is when the marketing hype gets well ahead of the reality, and I think you’ll see that a lot in this space. We’re focused on a few core things.

We’re focused on duration on therapy, so we help the physician change therapy. How long are patients on one therapy, and is that longer than they would have otherwise been on standard of care? We’re very focused on improving duration on therapy.

We’re focused on reduction in utilization of the health system, where utilization may equate to some sort of adverse event. We don’t want to see patients going to the emergency room on the weekend because they’re having a reaction to the chemo that they’re on. We look at that as a measure of success: are we improving the quality of life of those patients? Living longer, and quality of life.

And we do look at overall survival. We do work with the health systems that are our partners to track overall survival and look at life extension, and try to quantify that and keep improving.

In the ideal world, for us, you have full visibility into what’s actually happening, which is not the case today. Second, we’re looking at how we achieve meaningful improvements in those 3 measures. I certainly don’t want to sit here and make any promises as to what those numbers will look like in a year, 2 years, 5 years…but those are the measures that we focus on as company.

My closing question is a pretty simple one: what do you, personally, get out of this work?

Well, where to start? Let me put a few angles on it.

For me personally, thinking about what I wanted to do, I wanted to make a big impact. There are only so many ways in medicine that you can have an outsized impact as one person, and this is one of them: using technology to elevate practice across an industry. Personally, one of the core things is figuring out how to have a disproportionate impact on hundreds of thousands or millions of patients as opposed to the 1,000 or 2,000 patients that I’d ever personally see if I was a physician. That’s one of the things I get out of it.

Second is just seeing the tremendous excitement from the physicians that we work with and just opening up their eyes to what technology can do to improve their lives and the lives of their patients, that’s incredibly gratifying.

And frankly, the individual patient stories. We see examples that come to us regularly of specific patients who are treated in the health systems that we work with who had opportunities for better treatments made available to them, in part, because we were there. For me, that’s always very gratifying.

I’ve said this in other settings before: you don’t go into precision medicine or health IT to make money. Just being real, we’re in Silicon Valley…if we were in this for the money, there are a lot of other things we could be doing, everyone at this company. The reason why I and everyone else is here is the impact on patients. That’s what it comes down to.