From Law to Listening: Barry Liden on Data and Patient Voices

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Show Notes

“Sometimes you ask people what’s important, and they’ll give you the expected answers. But then someone comes in with a different perspective, and it changes everything.” — Barry Liden

Barry Liden

Managing Advisor

Barry Liden merges legal expertise with extensive medical device industry experience, notably establishing a patient engagement function within a Fortune 500 company. Based in Washington, DC, he serves as Director of Public Policy at the Leonard D. Schaeffer Center for Health Policy and Economics while running Patient Voice Advisors. His work spans North America and Europe, focusing on incorporating patient voices into healthcare policy. Barry is recognized as a thought leader in patient input science, patient advocacy, and policy analysis, consistently driving innovative solutions that address stakeholder needs and preferences.

Transcript

[00:00:00] Ursula: Welcome to Amplify Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations. I’m Ursula Mann. 

[00:00:11] Brent: And I’m Brent Korte. Together we’re talking with [00:00:15] patients, caregivers, and the healthcare change makers who are listening and taking action. 

[00:00:20] Ursula: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.[00:00:30] 

[00:00:34] Ursula: Brent, I don’t know if I ever told you this, but this next person, I picked him up virtually, but I had a good gut feeling when you meet someone and you think they’re pretty cool. I did have one hesitation. 

[00:00:44] Brent: What’s [00:00:45] that hesitation? 

[00:00:45] Ursula: He’s a cat person, but I was gonna let that go. It’s diversity. So dog lover, cat lover.

[00:00:52] Ursula: But other than that great gut feeling and I just thought, what a neat area. Talk about studying something to really [00:01:00] learning life and changing as you go. I’m excited. It’s also experience beyond Canada, which is something you and I have spent a lot of time talking about over the years. Best practices in Canada are great and important, but so are best practices [00:01:15] globally.

[00:01:15] Ursula: What are your thoughts on that? 

[00:01:16] Brent: I totally agree. I think I’m more interested in seeing the two of you argue. He is a legal background. I want to see how that head-to-head goes. No, I am interested in his perspective. I don’t think we’re gonna get into, maybe not this podcast, maybe it’s the [00:01:30] future one where we get into more of the how you met online.

[00:01:32] Brent: That’s a whole other story. I’m excited to talk about Barry, his perspective and background, and he’s got. That really good baritone voice, 

[00:01:40] Ursula: he really does. It was sparks at first sight online, if that is even a real thing. [00:01:45] But you could just tell great energy, great alignment. He’s a great fit for us at Haitian Waste Partners and brings really thoughtful perspectives to data, which is interesting with a law background.

[00:01:56] Ursula: And I think with that we need to dive right in. You ready? Let’s go.

[00:01:59] Barry: [00:02:00] Thanks for having me. Really appreciate it. Really excited to chat about this stuff. I got into law because I liked arguing, and I think part of the challenge that we’ve got today in today’s healthcare environment is one where we have to argue more.

[00:02:13] Barry: Like we’ve gotta figure [00:02:15] out a way to push back on the establishment, change the way that things are going right now. Quite honestly, I am personally very biased, but I believe that too much of the healthcare system, too many of the decisions are made by people who are not the [00:02:30] ultimate person that gets the treatment.

[00:02:32] Barry: And that’s not something that I want. If I’m a patient, I wanna be in charge of my own decisions, and I want to have access to the stuff that is important to me. And that’s what I’m really trying to do to bring the patient [00:02:45] perspective through data into the decision making process. 

[00:02:49] Brent: So Barry, great to have you on here today.

[00:02:51] Brent: You talk about data as well, law background, advocacy aren’t one you normally see, so maybe just talk a little bit more about that, about the data and getting into the sheets [00:03:00] and all that stuff that you sometimes refer to. 

[00:03:03] Barry: Yeah, as I’m a freak in the sheets as a big fan of Excel and data, part of that is actually going.

[00:03:09] Barry: Even further back, Ursula mentioned I’d started out in law school. I actually started out in computer programming back in the mid [00:03:15] eighties. I was working in basic and Fortran and Pascal, and I made the mistake of deciding to go into psychology. If you look at the stock price and the revenue and all the assets that were generated by people who are programmers like Bill Gates, [00:03:30] not to say that I’m necessarily a Bill Gates, but maybe I would’ve fared better if I had pursued computer programming.

[00:03:35] Barry: No, my motive was. It’s very selfish. I looked at the ratio of men to women in classes, in the computer science class versus psychology. It was just a lot more favorable [00:03:45] in psychology for me. But anyway, somehow ended up law school and ultimately found myself at a medical device company where a lot of the decision making was really driven by data, and I found that.

[00:03:59] Barry: Particularly [00:04:00] with one therapy that we had worked on. Those decision makers were really relying on science. This, and I use kind of air quotes on science because a lot of the economic analysis that was being conducted by the company and also the clinical evidence that [00:04:15] was generated by doctors mm-hmm.

[00:04:17] Barry: Was really great data, but. It wasn’t really taking into consideration the patient perspective, so I dug back into my roots in terms of loving data and economics and [00:04:30] figured out ways to measure quantitatively a community’s perspective. To bring that data to the table so that it’s at the peer level with health technology assessors, with health economics folks, with [00:04:45] C clinicians.

[00:04:46] Barry: And I’ve worked with FDA and health technology assessors around the world to try to help make that happen. 

[00:04:52] Brent: So Barry, can you just talk about that a little bit more maybe, or give an example even, because I think that’s so critical. Like in [00:05:00] Canada, health Technology Assessment rules the day or. I shouldn’t say it that way, but I guess it rules the day though, in terms of recommendations and so on.

[00:05:08] Brent: And I think one of the challenges is exactly what you’re describing, which is the of the quantifiability, if I can use that term, or the [00:05:15] giving a metric. ’cause so much is put on the clinical trials, comparative clinical trials, that sort of thing. And the patient perspective or caregiver’s perspective is often a bit of an afterthought.

[00:05:27] Brent: I shouldn’t say like an afterthought [00:05:30] or it’s an added bit of information instead of an actual metrics that’s measured. So yeah, maybe would be interested in your further thoughts on that. 

[00:05:38] Barry: Yeah, actually the Canada, I love Canada. There’s a lot of reasons why other than the fact that you all are very nice people.

[00:05:44] Barry: [00:05:45] It’s also that your country, and actually one province, Ontario was the first health technology assessor in the world to actually incorporate a patient preference study, quantitative patient preference study into their ultimate decision. [00:06:00] And back in around 2017, they did their own analysis. They did a literature review and found this study out there that showed the quantitative data about what patients really wanted with respect to this particular [00:06:15] therapy that they were evaluating.

[00:06:16] Barry: Now I’m a little biased. ’cause actually it turned out it was my study that I had published and I didn’t know O is the Ontario Health Technology Assessment Committee. I didn’t know that they were gonna do this. I had no idea. We just published it ’cause we needed to publish [00:06:30] it because we were actually using it with other decision makers and they needed to see it published.

[00:06:34] Barry: So that’s cool. They picked up our data and they used it and actually used it in a favorable decision. And I actually have, and we can put into the show notes, a link to a video that I’ve [00:06:45] produced that was a webinar that we did with the woman who was head of OACs decision at the time. She explains how the decision came about.

[00:06:54] Barry: How they went through the process of evaluating the technology through their traditional [00:07:00] means, which is look at the economic evidence and the clinical evidence, but then they layered on top of that the patient preference data, and that helped them actually flip from what was which as she puts it almost like a tie.

[00:07:11] Barry: It helped break that tie. 

[00:07:13] Brent: Great example. ’cause I think, I [00:07:15] do think that happens quite a bit or the, the tie situation happens quite a bit as we see recommendations come from the Canadian Drug Agency where it can flip either way and companies will sometimes request for reconsideration, that sort of thing.

[00:07:27] Brent: And to have something that does that. Now, have you [00:07:30] seen other jurisdictions, whether within Canada or other jurisdictions globally, just in the work that you’ve done, where that’s evolved and that transforming of assessments or transforming of how this is perceived? 

[00:07:43] Barry: Yeah, absolutely. Actually, [00:07:45] CDA CA Canada has done a great job of updating their processes since 2017 to where their process includes the more rigorous approach to evaluating what patient preference data is that’s out there, has a guidance on it, or scientific advice is [00:08:00] what they call it.

[00:08:00] Barry: And actually, PD. And Nsac, which is in Australia. They too have actually experts on their review panel that have patient preference data expertise, and they help advise them on that. However, [00:08:15] the truth is that it is still very much at the early stages that while I think a lot of countries pay some lip service to, Hey, we want to hear what patients want and what they say, and maybe they have a patient or two on the review [00:08:30] panel.

[00:08:30] Barry: Or some other metric, then that’s when a lot of the patient perspective just gets lost. I’m super passionate about that. I think it’s a shame that a lot of these countries and organizations set up this idea that they’re incorporating the [00:08:45] patient perspective, yet they’re not really following through on that, and I don’t think they’re evil or wrong or lying.

[00:08:51] Barry: I think it’s just that they need help on figuring out how to do that based on the way they’ve been doing it all these years. 

[00:08:58] Ursula: Barry, I love that you hit on some [00:09:00] really key points, but I’m also thinking I should never get into an argument with you ’cause you’re gonna win. But with regards to getting into patient engagement, I often hear myself saying, the only wrong number of inclusion is zero and one patient or one caregiver, [00:09:15] and they may or may not have the disease in question is a really tricky situation.

[00:09:19] Ursula: I’m interested in your thoughts around. A surprise for the development team. You got into data out of law. You figured out that you really liked the tech side of things. What’s [00:09:30] something that happened along your career where somebody learned something as a result of having the right voices around the table and they did something differently?

[00:09:38] Barry: Yeah, it’s, I love that, ULA. That’s a great question. I will never forget when I first got into patient [00:09:45] engagement. There’s a longer story as to how I did and why, but one of the first projects that I worked on at the company I worked for. It was actually like a, also, I hate to admit, this is actually more like a team building exercise.

[00:09:58] Barry: It was, Hey, [00:10:00] let’s go listen to some patients, and so I was like, okay, yeah, let’s do that. Hey, at least they’re listening, right? It may be in the context of team building, but still whatever. These were engineers that were part of our r and d group. They were working on new technology, kind of [00:10:15] skunk work technology on heart failure, and so I set up a, what I call patient listening session.

[00:10:21] Barry: Sometimes they’re referred to as patient advisory boards, but I set up a, a live session where we had at a hospital, four or [00:10:30] five patients and their caregivers, along with clinicians that were their primary caregivers, and these were very sick people. Pretty sure none of them are still alive. This was only about four years ago.

[00:10:40] Barry: They were at the end of their life and we had all the engineers sitting around the [00:10:45] table and I was the facilitator and I asked all these questions and get all this information. We took great notes and we did a tried to turn this into, Hey, how can we turn this data into something that could be helpful?

[00:10:57] Barry: What did we learn from this? And we did a debrief with the team [00:11:00] afterward. And they were just so excited. It actually was an amazing team building exercise. It got everybody really excited about being a part of the company. They learned a lot more about it, and all these r and d folks were like, afterwards, we’re on the bus heading back from USC [00:11:15] up in LA back down to Orange County where our company was, and they were just chattering about, oh my.

[00:11:20] Barry: I heard things that I never, I don’t ever get to get out from behind my desk. Here’s an opportunity to really get to see the people that benefit from whatever it is that we’re inventing. And [00:11:30] years later, almost every time I ran into him on campus, this one engineer bumped into me and said, I will never forget that for the rest of my life.

[00:11:38] Barry: And what it helped me do is recognize that what we were focusing on, which was X, Y, Z. It [00:11:45] was really the wrong thing. What really matters to patients was, in this case, fluid management. And we really need to focus on that. And that to me was really, it helped me with my inspiration for wanting to come to work every day.

[00:11:57] Barry: And I think it really helped them too, but it also helped us in [00:12:00] a product development. And that’s where I really started to saying, Hey, this can really work. 

[00:12:03] Brent: That’s fascinating. I think I can relate totally to what you’re talking about, Barry and situations in my career as well, where it seems like it’s a team building event or they added into the national meeting type thing, but the [00:12:15] impact is significant both on, at the time I was maybe.

[00:12:18] Brent: Seeing doctors and you’re talking to the doctor, as you say, you’re focused on this particular portion or a government official or whatever that happens to be, but then really taking into consideration that what you’re talking about may [00:12:30] not be actually what’s the most important to the patient. I’m interested as well, just in your perspective on we see with HTA, and I’ll maybe stick on that HTA broader market access type question is we kinda see.

[00:12:42] Brent: Points in time where the patient voice [00:12:45] is amplified, is risen quite a bit, or data is focused on a little bit more, or RWE. We’ve seen guidance on that as well and on real world evidence, and they tend to go up, up and down that way. But just your thoughts on that or what you’re seeing as trends in the marketplace.[00:13:00] 

[00:13:00] Brent: I think that’s 

[00:13:01] Barry: still incredibly important and we’re gotta figure out ways to continue to do that. I think though that on the positive end of it, we are seeing a dramatic increase in the number of patient preference studies that are being [00:13:15] published on. Weekly basis. A lot of that work is actually happening in Asia right now.

[00:13:20] Barry: China actually has been leading the way, this kind of research, so that’s inspiring and hopeful. I think that there’s some opportunities there, but I really think where [00:13:30] we can. Make a big impact as if all of us push our local and national governments to try to incorporate almost, I wouldn’t say mandate, but provide incentives to ensure that when [00:13:45] products come to them for a decision, that the data that is submitted includes quantitative, rigorous, non-biased.

[00:13:54] Barry: Information about what the patient perspective is. And Ursula had mentioned earlier [00:14:00] the N of one and the perspective of one patient. I would even argue that if you had an N of a hundred, you still may be missing the perspectives of others out there. And that’s what is, I think, the promise of, we have really [00:14:15] great opportunities to capture qualitative information and we have these ongoing conversations with people.

[00:14:20] Barry: We learn a lot. But if we can then reach out across the country, the world, and pick out that data, that information about what each person thinks, [00:14:30] I think we’ll find that there are some people out there who have really important perspectives. They may represent a small group of the community, but their perspective.

[00:14:38] Barry: Could make or break a product, and I’ve seen that happen in a number of different ways. A great example is there was a [00:14:45] product that had been on the market for years and everybody had all of the end points or outcomes mapped out. Everybody knew what people cared about. And so one time there was this patient that was being interviewed actually by the British [00:15:00] Medical Society.

[00:15:01] Barry: And he brought up something that I had never heard before. I’d been in this business for 15 years and I afford it to a bunch of people in r and d and market research. Nobody had heard of that outcome like I had, [00:15:15] and we realized that this was a new outcome that people needed to be aware of. And when you bring it up with other patients and say, Hey, what, wait, what about this outcome?

[00:15:25] Barry: Suddenly people. You know, their eyes open and said, oh yeah, of course. Yeah, no, that’s a thing. [00:15:30] And so sometimes you ask people, Hey Brent, hey Ursula, what’s important to you? You’re gonna go off the stuff that you’re used to thinking about and you’re exposed to. But if you ask somebody who may be coming from a different perspective, they may [00:15:45] say, what about this?

[00:15:46] Barry: And you go, oh, wow. Yeah, that’s important. 

[00:15:49] Ursula: Barry, I think that’s so important and you struck on something that’s also something we chat about a lot and it’s different ways to engage different people. And in that way we can hear from a lot. [00:16:00] I like that you highlight is a hundred the right number, not if we haven’t hit different perspectives.

[00:16:04] Ursula: And then there’s other complexities like health literacy as well. So given your perspectives, you do some work with us at Patient Voice Partners, you’re gonna be a co-host on [00:16:15] Amplify. What are you most excited about and what do you want listeners to know about you? 

[00:16:19] Barry: I don’t know if I want them to know anything about me, but I do think that part of the reason that I got involved with Patient Voice Partners and why I’m so excited about this work is the [00:16:30] attitude and the approach and the experience that everybody has around the table.

[00:16:35] Barry: When I first met Ursula, it was just like a breath of fresh air that I have somebody else who is also as excited. About trying to learn from patients [00:16:45] directly and bring that information to the table. And then as I got to know more and more people that are part of the patient Voice Partners team, I got more excited about it.

[00:16:53] Barry: So I think it’s really the ability to have a community of people who are, I wouldn’t say that’s, I don’t know. I think [00:17:00] diversity of perspective is really important, but I think all. Heading the same general direction of trying to help out people who don’t have the kind of resources on their side that governments, [00:17:15] economists, employees at.

[00:17:17] Barry: Medical device or drug companies have the people whose full-time job it is to do this. You know what? There’s a woman out there in Baltimore who’s trying to get her kids to school and all she’s got is access to [00:17:30] public transit. To do that, she’s got a lot of other stuff on her mind. She doesn’t have the resources that we all have here sitting around the table.

[00:17:37] Barry: That’s the person I’m thinking of, who we want to try to help out, and I think that’s where we can make a big difference. 

[00:17:43] Brent: Great. Thanks [00:17:45] Barry. Thank you for bringing your professional insights and your personal reflections to the conversation. Really appreciate it and it’s been great to have you on and look forward to having you as a co-host on future podcasts.

[00:17:56] Barry: Guys, thanks for having me. Great to see you guys. 

[00:17:58] Brent: Take care. Thank you.[00:18:00] 

[00:18:03] Ursula: Thanks for tuning into Amplify, a podcast powered by Patient Voice Partners. If today’s story moved, you share it, leave a review and help us amplify more voices. 

[00:18:14] Brent: If you’re [00:18:15] a patient or caregiver, you can join Patient Voice connect to share your experience and help shape research and care. Visit patient voice partners.com to sign up or learn more.

[00:18:26] Ursula: If you’re a clinician, advocate, innovator, or [00:18:30] system leader, and you’d like to be a guest on the show or share a story, reach out directly through the contact form on that same page. You’re also welcome to join an anonymously if preferred, 

[00:18:40] Brent: follow us on LinkedIn at Patient Voice Partners for updates behind the scenes [00:18:45] content and to meet our upcoming guest.

[00:18:47] Ursula: Until next time, stay connected. Your voice [00:19:00] matters.