publication date: Jan. 13, 2017
Conversation with The Cancer Letter
Simon: The moonshot will continue, but the electronic health record industry must step up
The National Cancer Moonshot Initiative was created by a memorandum issued by President Barack Obama.
The wide-ranging public health initiative will cease to exist on Jan. 20—eight days short of a year after it was created—when the keys to the White House are handed over to Donald Trump.
The money remains, as does the name: the 21st Century Cures Act slates $1.8 billion over seven years for the Beau Biden Cancer Moonshot. In the absence of Trump’s commitment to renew the initiative, it is unclear whether the moonshot will continue as a White House project.
“I had not spoken with anybody from the transition,” Greg Simon, executive director of the White House Cancer Moonshot Task Force, said to The Cancer Letter. “There has not been any formal meeting with the moonshot team that I’m aware of. That said, obviously, there’s a lot of interest in the moonshot, Republicans and Democrats.”
Vice President Joe Biden will continue to be an effective convener after he leaves the White House—through the moonshot nonprofit that he plans on creating, Simon said.
“One of [Biden’s] superpowers is that he is able to bring people together who otherwise might never meet to work on common problems to come up with a common solution,” he said. “In whatever guise, as an individual or as the head of a nonprofit, he would continue to partner with other nonprofits, because that’s his nature.”
Obama earlier this week awarded Biden the Presidential Medal of Freedom, with distinction, exactly a year after Obama announced the moonshot in his seventh, and final State of the Union address.
The award is the nation’s highest civilian honor.
“He suited up for our Cancer Moonshot, giving hope to millions of Americans touched by this disease,” Obama said at the surprise award ceremony Jan. 12. “To know Joe Biden is to know love without pretense, service without self-regard, and to live life fully. As one of his longtime colleagues in the Senate, who happened to be a Republican, once said, ‘if you can’t admire Joe Biden as a person, you’ve got a problem. He’s as good a man as God ever created.’”
Simon said he is optimistic about Congressional funding for the moonshot over the next seven years, even though the $1.8 billion needs to be funneled through NIH, before it reaches NCI to implement the scientific recommendations of the Blue Ribbon Panel (The Cancer Letter, Dec. 2, 2016).
“As you know, the NIH and the NCI have had, let’s just say, tensions around the family dinner table since the Nixon War on Cancer,” Simon said. “The other thing—I’m sure probably came into it—is that there’s an acting director at the NCI, and there’s Francis Collins at NIH. Doug Lowy is a terrific person, but I’m sure there must have been some trepidation on the Hill that he may not be the permanent director, and if he weren’t, they wanted to make sure the money was run by someone who’s
“I think the key thing is, getting $1.8 billion and having it have a one-stop flight instead of nonstop flight to get to the NCI, is not a problem in our view. While it was not a proposal from us, the Congress … both the authorizers and the appropriators, chose to funnel the money through NIH and have the disposition to NCI occur through coordination with NIH. I don’t think that’s going to be a problem.”
In 2016, the moonshot endorsed and highlighted numerous initiatives—including NCI’s $20 million Genomic Data Commons—aimed at accelerating scientific discovery through aggressive data sharing for cancer research (The Cancer Letter, April 29, 2016). However, another piece of the bioinformatics puzzle remains largely unsolved: what else can the moonshot do to promote interoperability and common standards among electronic health record companies for aggregating patient data? (The Cancer Letter, June 3, 2016)
“We have to turn to the industry in response to the Cures Act and say, ‘Okay, you’re a multi-billion dollar industry now, you got $30 billion [in 2009 ARRA funding] from the government. It’s time for you to step up the way the credit card industry did many years ago,” Simon said. “I think this, at this point, should be an industry-led solution, because the government can only lead the industry so far if the industry doesn’t want to be led. At this stage of the game, the industry needs to really take up the bid and run with it, and that’s what we hope we’ll see.”
Simon said interoperability would continue to be at the “top of the chain of priorities” for Biden, who recently said he would also address the issue of drug prices after he leaves the White House (The Cancer Letter, Jan. 6).
“I think powerful message and passionate people don’t need power of the White House to get things done,” Simon said. “I think what Biden does have is authenticity, and passion, and credibility with people who have been touched by cancer, and they are willing to help him help them, not because they get to come to the White House, but because they like having his leadership.”
Simon spoke with Matthew Ong, a reporter with The Cancer Letter.
What would you say is the most important and tangible impact of the moonshot in 2016?
I think the most tangible aspect of the moonshot was creating a national movement to rethink how we approach cancer research and development.
It’s not about any one project that we did, although there were over 70 that had been put together, and that continues to grow, but it’s about the motivation behind what’s creating these activities, and that is people responding to the vice president’s passion for us to bring a bigger sense of urgency to the fight against cancer, and to change the system to be more appropriate to the tools we have at hand in the 21st century. So we see people actively rethinking what they can get done, how they can get it done.
The reason I say that’s our biggest achievement is because that is going to make sure this continues beyond our time in the White House.
Would you say you are happy with what you’ve achieved? Do you have any regrets? Or is there anything that you could have done differently, looking back?
Certainly, I don’t have any regrets. I think we couldn’t get to everything that people wanted us to get to and that we wanted to get to, given the constraints of time and resources. I mean, we started in February. I joined in March. It took me most of April to put a team together, but once we had the people working on this, I think we got more done than I had anticipated and more done, than I think most people anticipated, but that’s because the idea took hold and that became a multiplier. It wasn’t just we do something and then we do something else. We would do something and then there would be this enormous response that took it to a different level.
In terms of if we did it over again, I just think it would have been nice to have the Cures Act passed before the very, very, very last minute so we could have done more planning for the outyears. But the Blue Ribbon Panel’s roadmap for how to spend additional money for the moonshot is a very good roadmap, and I think it’s one that will be followed.
How do you see your roles—yours and the vice president Biden’s—evolving, going forward?
As you know, there was the story in The Post regarding his setting up a nonprofit going forward, so he is planning to make that the center of his cancer activities. I’m not in a position yet to discuss any post-administration plans of my own, but in whatever I do I will continue to be involved in the fight against cancer, as I have been for many years.
Do you know any details about the upcoming nonprofit organization? How much money would be going into it, and where would it come from? Will it be from the industry, the public, philanthropy, or all of the above?
No, is the short answer. I know that I’m not allowed to talk about the fundraising details—neither is he—until we leave the office, but it would be a 501(c)(3) nonprofit. How he raises the money and from whom is not something that I’m privy to, nor could I even talk about until we leave office.
How will the moonshot have continuity and gravitas, now that Mr. Biden and you will soon be working without the authority of the White House?
My last boss in the White House was Al Gore. Without the benefit of the White House, he was part of a Nobel Prize and an Oscar for raising awareness about climate change. I think powerful message and passionate people don’t need power of the White House to get things done.
Joe Biden happened to be in the White House when this tragedy happened in his family. The world is full of examples of passionate people, from families to leaders of the free world, who take on a cause and change the future of that problem, who don’t have the power of the White House behind them.
I think what Biden does have is authenticity, and passion, and credibility with people who have been touched by cancer, and they are willing to help him help them, not because they get to come to the White House, but because they like having his leadership.
As a nonprofit, will the moonshot also become an advocacy organization? Meaning, do you foresee the moonshot nonprofit joining other cancer groups in lobbying efforts?
During the moonshot, we have been cooperating and coordinating with any foundation we can find that is working in the cancer space, and many not in the cancer space, who have solutions that apply to cancer. I do not think that that’s going to stop when he leaves the White House.
One of the things he’s talked about all year is the politics of cancer as being more difficult than the politics of politics. One of the reasons is because there’s so many cancer foundations, and they don’t always play together well. One of his superpowers is that he is able to bring people together who otherwise might never meet to work on common problems to come up with a common solution.
In whatever guise, as an individual or as the head of a nonprofit, he would continue to partner with other nonprofits, because that’s his nature.
Let’s talk about the funding for the moonshot. Key players in oncology and pretty much the entire cancer community have stated that funding for the moonshot in the Cures bill should have gone directly to NCI. The question is, why did the language of the bill give the funding to NIH, as opposed to NCI, despite unanimous support for the institute as the leader of the National Cancer Program?
Number one, as you know, the NIH and the NCI have had, let’s just say, tensions around the family dinner table since the Nixon War on Cancer. And of course, the NCI has the bypass budget, which they do directly with Congress, but NCI does have a very integrated relationship with the NIH.
While it was not a proposal from us, the Congress … and let me add one more other thing, not all cancer funding comes out of NCI. NIH does a lot of cancer funding. But the Congress,
both the authorizers and the appropriators, chose to funnel the money through NIH and have the disposition to NCI occur through coordination with NIH. I don’t think that’s going to be a problem.
The FY17 spending, from everything I’ve seen, is going to follow the Blue Ribbon Panel recommendations, and there is no tension there between the NCI plan and the NIH plan.
The other thing—I’m sure probably came into it—is that there’s an acting director at the NCI, and there’s Francis Collins at NIH. Doug Lowy is a terrific person, but I’m sure there must have been some trepidation on the Hill that he may not be the permanent director, and if he weren’t, they wanted to make sure the money was run by someone who’s in office. That’s just conjecture on my part.
I think the key thing is, getting $1.8 billion and having it have a one-stop flight instead of nonstop flight to get to the NCI is not a problem in our view.
Have you or Mr. Biden heard from the Trump administration on the moonshot?
I had not spoken with anybody from the transition. The vice president has met with Mr. [Mike] Pence a few times. There has not been any formal meeting with the moonshot team that I’m aware of.
Now, let me also point out, the presidential memorandum that created the moonshot expired with the administration no matter what, so whoever was president would have to start the moonshot again legally for it to continue. So technically, when the transition began inside the White House, the moonshot was not part of a transition, because we had an expiration date of Jan. 20.
Unlike other offices that continue no matter what, we have to be renewed, so to speak. That meant that we were not on the top of anybody’s list who was looking at transition memos, because we were not a group that carried over. That said, obviously, there’s a lot of interest in the moonshot, Republicans and Democrats. There’s still a few weeks, so we don’t know what could happen.
Experts have said that one of the core problems with data-sharing is the lack of incentives for the electronic health record companies to interoperate—an unforeseen consequence of the 2009 stimulus program. Has the moonshot made headway with EHR companies in 2016?
We [had a meeting Jan. 6] focused on the provisions of the Cures Act that require providers and the EHR vendors to make it possible for patients to download their records in a way that they can transfer them to other providers or repositories or researchers. We included a wide swath of people from the provider industry, the technology industry, the EHR industry.
But before that, there were many things going on over the last eight years that dovetailed with the moonshot’s interest in data-sharing. There’s the so-called Sync for Science project that was about coding medical records in a standard way so that they can easily be shared. There is the medication list pilot that was just released at the recent meeting of the Office of the National Coordinator for Health IT that demoed people being able to download their full medication list and move it around as they wish.
There are a lot of things that had been going on, but the big question is how soon will it be as simple as downloading anything else on the web for people to download their medical records in a way they can use them, share them, manipulate them in terms of highlighting things and moving things around so they can share them with doctors for second opinions, they can share them with researchers, they can share them with other providers? That is the open question.
Who do you think would be in the right position to lead that effort? Who can do it, and what would it take?
The history, so far, of health IT, going back to the Bush administration, has been a stepwise iteration of technical standards and so-called Meaningful Use criteria to guide the development of medical records.
Then, with the HITECH Act at the beginning of the Obama administration, the 30 or so billion dollars was spent that supercharged the adoption of health electronic records, before all of the standards had been created for interoperability and for easy patient access, downloading, and data sharing. It is pretty clear that if we continue to do stepwise iterations of standards, it will be another decade before we reach interoperability and easy access to records. That has to change.
The fact that the thirty billion dollars did not fix that problem but just sort of spread the problem around by making electronic medical records more ubiquitous, but not more facile, means that now, we have to turn to the industry in response to the Cures Act and say, “Okay, you’re a multi-billion dollar industry now, you got $30 billion from the government. It’s time for you to step up the way the credit card industry did many years ago, which is to get together in a room, and within a month, pull together standards that allow you to share information between any systems, with any systems, with any user anywhere in the world, for whatever purpose the user wants, because it’s their data.”
Now, I’m not saying that’s easy, but it is definitely not as hard as we’ve made it, and there are ways to do it today. There are third parties that are not in the health business who are ready and able to either introduce area in a new open-source way, or be integrators so that any system’s data can be merged with any other system’s data through a third-party software.
I think this, at this point, should be an industry-led solution, because the government can only lead the industry so far if the industry doesn’t want to be led. At this stage of the game, the industry needs to really take up the bid and run with it, and that’s what we hope we’ll see.
Does the Cures Act provide a deadline for the EHR industry to make their records downloadable and transferable?
It seems like the onus is on Congress to push for urgency on this issue.
Yes, that is something that has to happen. Congress has been very active in this area for years. It is something that Congress, I’m sure, will do oversight on. There’s a very easy reason why Congress cares about it. They’re all patients. They’ve all experienced the problem. If they haven’t, their constituents have, and they tell them about it.
Let me clarify one thing I said about the Sync for Science. I mentioned that it was a coding, but the purpose of the coding isn’t just to do coding. It’s to allow patients to access their data more quickly and send it to researchers through creating an electronic environment where you can share the records electronically much more easily.
But that is a pilot. That is a pilot with a small group of companies and users. We have to get past the pilot stage and really get to the real thing the real way. That’s for the last question. That has to be industry-led and, industry needs to take responsibility for it.
This is definitely one of the priorities for the moonshot going forward, anyway.
Yes. If you’ve followed Biden all year, data sharing has been at the top of the chain of priorities. I might point out that just today, in my news-gathering that I do every day, there were two or three articles on the impact of health industry being behind the curve in using Big Data and the problems that can be solved with a much more aggressive use of Big Data by the health industry.