Patient-Scientists: A Valuable Perspective in Medical Research

(intense music) - This is Lab Medicine Rounds, a curated podcast for physicians, laboratory professionals and students. I'm your host, Justin Kreuter, the bow tie bandit of blood, a transfusion medicine pathologist at Mayo Clinic. Today, we're rounding with Delaney Liskey, a regenerative sciences PhD student at Mayo clinic to talk about why patient scientists are a valuable perspective in medical research, and to kind of elaborate a little bit on what role they play.

So thanks for joining us today, Delaney. - It's an honor to be here, thank you so much for having me. - It's so cool, when I first saw your Ted Talk, and I think we'll definitely link to those in the show notes, it really kind of blew my mind away a little bit. A lot of times in medicine, I'm used to thinking about physician scientists, and scientists, but I really hadn't thought about, or was aware, of patient scientists. Can you kind of start off by,

kinda what is a patient scientist? - Absolutely. So, as a very direct answer, I define this concept as someone who is equipped with the laboratory skills to apply their personal experiences with a disease towards contributions in biomedical research. So in other words, this is a patient who researches their own disease at the laboratory bench top itself, so literally, a member of the research team.

- And I guess, can you kind of riff on a little bit, so why are they bringing a valuable perspective

in medical research? A lot of times we're used to thinking about scientists spending a lot of years really developing a line of research and thought, what's the perspective of value they can bring to the table? - Yeah, so, in research, all of our experimental pursuits start with a fundamental question. And it takes about 12 years to get a potential treatment from a lab to become available in your medicine cabinet.

And of course, there are exceptions to this, but in other words, it's this curiosity-driven science of today that leads to the treatments that we have tomorrow. But I will mention that, despite the tremendous advancements that we make in our understanding of diseases within biomedical research, we still remain far away in the fact that there are a lot of people suffering with disease.

And much of this research that's being pursued today is actually being driven by people who have not experienced the diseases themselves. And this is not necessarily a bad thing, I do wanna emphasize that, but we may be missing the perspective of those that we're striving to help. And so your question was, why is this a valuable perspective?

And that's because patients are essentially like a walking database, they have exclusive insight as to how the disease affects the body at the individual level. And of course, no two disease cases are the exact same, each patient experiences a unique set of circumstances. So patients, coupled with the acquired laboratory skills, can develop instrumental questions that are crucial to advancing biomedical research, that those without the disease may not think to ask.

- Yeah, your answer really resonates with me, as a transfusion medicine physician, we talk a lot about, patient blood management, is a a big focus, 'cause in the past, a lot of focus was on product blood management, we were always in interested in our inventory, but like we wanted to put the patient at the center. And more recently there's been a lot of conversations about, are these outcomes that we're looking about in these studies, are these even relevant to patients?

What does the patient think of this? Is this adding value to their life and their experience, or is this something that, maybe, it's more in the interest of the medical establishment community?

Something else in your answer I really kind of keyed on was, you're really talking about, defined a patient scientist as somebody that has these skills, these research skills, and you've been somebody that is really leading the charge here in developing these skills. I was wondering if you could kinda share with our audience, what has surprised you most about this experience of being a patient scientist?

- Right, yeah, so as you mentioned before, we have patient advocates who do consult with doctors and scientists, but this does fall at the end of the research process, for the most part, so in clinical trial design, and approval, and things like that. But for me, as you mentioned at the beginning of this chat, so I'm a regenerative sciences PhD student at Mayo, and I have great interest in understanding multiple sclerosis, or MS.

And even more specifically, I'm interested in restoring vision in patients who have lost it as a result of the disease. And this is because I was diagnosed with pediatric onset MS when I was 11 years old, and so that's rendered me visually impaired by the time I was 16 years old. And childhood MS is an incredibly rare form of an extremely common disease, so, just to put that statistic into perspective.

And during my lengthy hospital stay, during the time of my diagnosis, the clinicians would enter my hospital room and discuss with my parents what I had felt had gone well above my fifth-grade vocabulary level. The next thing I know, I would be wheeled away to have very invasive diagnostic procedures done to me. And so, out of my efforts to offer a counterargument, all I could really do was cry, I mean, I was just a little kid.

And I remember I was being wheeled away for a lumbar puncture, so just an incredibly invasive diagnostic procedure, and I swore to myself on my way there, I was like, never again, will I be in this position where I can't even have a conversation, I don't know what's going on.

And so, this was back in 2008, and my parents had left me with an iPad, thinking that I would just pass my time by playing games and checkers and stuff like that, but what I did with that iPad was I actually was researching the words that I had overheard from the day before. And also, I was asking questions for anybody that would come into my room.

So whether that was nurses, janitorial staff, kitchen staff, doctors, it didn't matter, I had a question for everybody, and I realized that everyone had something to teach me. So, not only was I required to develop the critical thinking skills to be able to ask the questions related to my experiences to begin with, but I also had to develop effective communication skills.

And so, that's sort of the backstory to what drove me into biomedical research, and so when I grew older, I sought out opportunities to study MS within a laboratory. And so, I interviewed at a lab at the University of Virginia, which is my undergrad institution, that studied MS, and I became a researcher there for the entirety of my college career. And in this lab, that's where I began to learn the relevant laboratory techniques to investigate this disease.

So I was able to route my prior questions in a more applicable way, in a more clinically relevant way. And so, my questions went from, for example, what is happening in my body, to, what are the types of cells involved during an immune system attack? And so that's really the questions that we focused on in that lab at UVA.

And then after graduation, I was awarded an NIH Postbac fellowship to do research at Mayo, and now I'm a graduate student on the Jacksonville site, pursuing an MS-related project here. I do wanna mention, though, that I actually didn't talk about the fact that I had MS until just last year, so I never mentioned it to the lab or anything like that, I was pretty worried about it. But I began to realize along the way that having this disease was not a weakness,

but actually a massive strength, because I had exclusive insight into the condition that was being studied. - Wow, I did not expect this twist and turn, I expected that this was something that you've been talking about along the way, but I can certainly appreciate how you're kind of maybe questioning how might you be perceived, and a lot of concerns like that. Since you have shared this, what has been your experience interacting with the research community?

- It's interesting, because back when I was an undergraduate student pursuing these projects, I was constantly applying my questions towards the research that we were doing, so when we would get a result, I would be thinking to myself, "Okay,

does that mean I have this too?" Or, when we were designing experimental questions, I would be like, "Well, what does this have to do with patients?" I just felt like it was super interesting.

But now that I'm more open about it, I guess our questions have become more clinically relevant in my context, so that's why I'm interested in things like vision restoration, and optic nerve, and stuff like that, is because it directly impacts me, and I tell people about it now and stuff like that, the people who pioneer the research. - Oh, very cool.

So what if I flip that question around a little bit, and not so much about your experience with it, but what are your kind of reflections, thought, about, how should the medical community, we have a lot of medical laboratory scientists, we have a lot of physicians that listen to those podcasts, what should they understand about developing these relationships, or seeking out or welcoming patient scientists in their research interests or questions?

- Yeah, so, I mean, I think it's obvious that we are interested in our own diseases, I think it's an exciting topic, we would love to talk about it if given the opportunity, so I think creating an environment that's inclusive and welcoming is instrumental to fostering patient scientists.

And so what I mean by that is, a diagnosis of a disease can be of, course, a very vulnerable experience for lots of individuals, and a lot of people likely don't talk about it, likely due to fear of being treated differently and things like that, like I had mentioned a little bit ago, so I think creating a space for patients where they could feel comfortable discussing what might be considered a bit more vulnerable pertaining to their diagnosis.

And as of right now, we actually don't have a metric of who is in the field pursuing research related to their own diseases, I couldn't tell you the breadth and diversity of the community, what diseases are being covered, anything like that. So right now we are working on that metric, and in the recent Ted Talk I gave, I was proposing the recruitment and training of patients into the scientific workforce to study their own disease.

So we're in the super early, early stages of establishing everything, but it's well on its way, so hopefully within the next couple of years or so. - That's very cool, so I guess if I ask you about, what do you see for the future for patient scientists, you're sort of giving us some of that insight for recruiting more people into the research community. - Hopefully, down the road, there'll be a patient research scientist on every research team.

- And what's been your own experience, I imagine, with your research background in undergrad, in MS, in your own diagnosis, I mean, when you go to those either patient or research conferences, what is your experience like in those situations, given that you're on both sides there? - (laughs) Well, honestly, my favorite full turn of events is when I was that little girl with the iPad in the hospital.

I was actually reading publications from the Mayo Clinic, from the Center for MS and Autoimmune Neurology, the clinicians right out of there, and now I work with them here. So, it's an amazing full circle of events, honestly. (Both laugh) - It's super cool. And something for our listeners to kind of ping on is,

just here, with Delaney, we're seeing a different perspective, even though I think many of us talk about being patient focused, patient centered, you're giving us this insight and making us more aware of patient scientists and how might we collaborate with one.

And like you're saying, if somebody has an interest in becoming a patient scientist, maybe in something we work with, whether that's blood transfusion or whatever somebody else is working in, that's an interesting question of how do we work with them, train them up, give them some of that research, exposure and experience. 'Cause I guess it's coming from a little different pathway than, I guess, classically, I think about a PhD in graduate school.

- Right, I mean, training a patient scientist in the biomedical workforce is literally going to make the questions just about as clinically relevant as they can be. Starting with the question itself, too. So that's the 12 years of research that I mentioned earlier, we're actually starting at the first stop. - Yeah, yeah, it's a classic backwards design in the education world of, if you are asking the right question,

you're going in the right direction there. (laughs) Well, thank you so much, we've been rounding with Delaney Liskey, and so thank you for taking the time to talk about this with us, talking to us and introducing us this concept of patient scientists. - Thank you so much, Dr. Kreuter.

- And thank you to our listeners for joining us today, we invite you to share (intense music) your thoughts and suggestions via email, please email any suggestions to [email protected], and reference this podcast. If you've enjoyed Lab Medicine Rounds Podcast, please subscribe, and until our next rounds together, we encourage you to continue to connect lab medicine and the clinical practice, and the patients, through insightful conversations.