We’d never heard of the Congressionally Directed Medical Research Program (CDMRP) until late last year, when we discovered it by accident. Established in 1992, the CDMRP (quoting from its website) “fills research gaps by funding high-impact, high-risk and high-gain projects that other agencies may not venture to fund.” The goal is to support breakthrough innovations that have the potential to transform healthcare and solve longstanding problems.
It’s heady stuff, but the federal government funds lots of big-brained science research. What sets the CDMRP apart is how thoughtfully it factors patients’ voices into its complex equations. All of its grant applications are reviewed by consumer advocates—people with no particular scientific or medical training but loads of lived experience as amputees, paraplegics, pain sufferers, cancer patients, transplant recipients, caregivers, and the like.
People like Phil Skiff.
A below-knee amputee since 2008, Skiff evaluates applications for research projects that involve prosthetic technology and limb care. The CDMRP invests roughly $15 million a year in this type of research, and competition tends to be steep. Applicants include university researchers, corporate R&D departments, government agencies, and other high-powered players. There’s profit, prestige, and career cache on the line, but Skiff is there to remind everyone what’s really at stake: amputees’ well-being.
That priority too often gets elbowed aside in the US healthcare system. We talked with Skiff early this year to find out how the CDMRP keeps patient needs front and center. Learn more about the CDMRP’s investments in O&P research at cdmrp.health.mil/oporp. And if you’re interested in getting involved as a consumer reviewer, the program is always looking for participants—here’s how you can get involved.
This conversation is edited for length and readability.
How did you get connected with the CDMRP?
I was like you, I had never heard of it and didn’t know anything about it. I got connected because the plastic surgeon for my revision surgeries works at the University of Michigan, which is about an hour from where I live. They have a lower-extremity clinic, and I’ve been there a few times to see some specialists and what not, and I got involved in research at the university’s kinesiology lab. They were doing these studies related to the BiOM ankle, which was still new at the time, where they did motion capture and measured your oxygen intake to determine whether or not the ankle was actually improving your endurance.
My name must have just gotten out there, because the consumer review group at CDMRP reached out to me. I had never heard of it, but it sounded fascinating. You get exposed to incredible stuff. And they deliberately include people with a consumer-level viewpoint—laypeople like myself—on the review panels.
It’s so interesting to me that they include someone who’s going to actually use the technology alongside all the engineers and medical experts and so forth. Do you know when that practice started?
I don’t, but they put a lot of emphasis on that aspect of it. And honestly, it is a little intimidating when you sit down on these panels. I’m the only one in the room that doesn’t have a PhD. I mean, these are some scary-smart people, specialists in very unique and interesting fields. The panels I’ve been on have somebody that sits in the bioethicist, chair, who’s responsible for reviewing the application from that perspective. They have a statistician, they have medical specialists, they’ve got a senior scientific review officer that leads the panel. And then they’ve got me, Joe Blow off the street, who is just trying to keep up.
The consumer reviewers are focused on a very specific thing. We’re not expected to understand all the science, although some of it is understandable. But our role is to specifically review the impact statement that’s included in the grant application, which is where they explain how their research is going to benefit people. I’ve been part of discussions where everyone will agree that something is an excellent research project, but it’s not really going to accomplish much other than gather data. In some cases that’s a worthwhile the objective, but from an impact perspective—is the project really going to change lives if it accomplishes its goals?—the answer has to be yes for us to fund it.
Do the specialist reviewers recognize your expertise and respect it? Do they ever actually defer to your opinion, as the only person who knows what it feels like to adapt to limb loss and accommodate it?
Absolutely, 100 percent. I’ve been really surprised at the extent to which these people actually listen to what I have to say and are genuinely interested in my perspective. I’m treated as a peer among these people. My scores are weighed as heavily as the senior scientist’s scores. We all provide comments on each application’s strengths and weaknesses, and mine are taken just as seriously as any scientist’s. It’s amazing.
What do you think accounts for that? Because I don’t often hear amputees tell me that their opinion is taken seriously by medical or scientific experts.
This program is managed by the Army, and whatever leadership that they’ve got in there, they clearly have the right attitude. That may be part of it, because some of that military culture seeps down. They actively recruit veterans for this program, and I happen to be one just by coincidence; not all of the consumer reviewers are. But all I can say is that it’s inherent in the culture of the program. The patient voice has to be in there, and somebody has in authority has to require that it is part of the discussion and part of the decision making.
Does this role come naturally to you? When you interact with your prosthetist or your doctor, are you pretty comfortable advocating for yourself?
That’s something all of us have to learn. It was a hard lesson for me to learn, because in our culture, it’s a given that the doctors know best, and whatever they think must be right. It took me a while to learn that nobody cares more about me than me, and that the doctors aren’t always right. It took me a while to come to a place where I felt empowered to push back against a smart doctor and say, “I hear what you’re saying, but I don’t agree.” We definitely need to continue to do everything we can to encourage people to take ownership of their own outcomes in their healthcare. That just hasn’t been part of our culture until very recently.
Can you describe any of the cutting-edge things that are coming across your desk?
They are very careful about confidentiality, especially during the application process. We’re not even allowed to discuss what we’re reviewing with our family or friends. We’re not allowed to tell our physicians if we’re looking at specific things. But in general, some of the things that have been really exciting are new surgical techniques. One that I was very familiar with, because I actually had it myself, was for dealing with neuromas. They did a study comparing two different surgical techniques, trying to determine if the outcomes are any different between the two. Because in some percentage of cases, that surgery fails and the neuroma reoccurs. This new technique may have a lower percentage of recurrence.
Another thing that’s exciting are new technologies for socket interfaces, like pressure sensors that could potentially auto-adjust the fit. I’ve always had significant volume-change issues, causing skin breakdown and all that stuff, so the possibility of having that adjustment being done dynamically could make a big difference for somebody like me.
We’ve also seen all sorts of things about the impact of different types of knees and feet on gait, and different types of amputee conditions, such as how different technologies impact diabetic versus nondiabetic amputees.
Are there any projects you would like to see? Any research frontiers that you feel would make a big impact?
A very easy answer to that one, for me at least, is osseointegration. That just seems to have the potential for really game-changing life impact on amputees, if they can eliminate the infection issues. I’ve already told my doctors that when they start looking at below-knee studies on that, I’m gonna raise my hand.
There are also simpler things, like moisture remediation—mechanisms to wick moisture away, which can be a huge issue. I mean, it sounds like a little thing, but in terms of impacting patient outcomes it can be very important.
Another thing—and I don’t know if this is so much of a research issue—is insurance equity. I’ve talked to so many people who can’t even get a replacement socket, even for a clearly a bad fit. That has to be fixed. But for me, from personal experience, I started out with a standard foot. And when I started having some issues with skin breakdown, I managed to get covered for an articulated ankle. It’s not powered or anything, but it has some lateral movement. The first time I stepped into it, it was like I was back on my own real leg. The difference was night and day. But it was about $30,000 just for this ankle. It really made me think about how we can make sure the people who need this technology can get it?
If anyone’s interested in getting involved as a reviewer, how would they go about it?
If you go to the website, you’ll see right in the top ribbon there’s a listing for consumer reviewers: who they are, what they do, and how you can apply. They are always looking for more people to participate. It’s not for everyone, because you have to sit down and review 50-page applications, which is not an easy task. But this is a way for you to get exposure to stuff that you won’t see otherwise.
