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In this episode of “Lab Medicine Rounds,” Justin Kreuter, M.D., sits down with Delaney Liskey, a regenerative sciences Ph.D. student at the Mayo Clinic Graduate School of Biomedical Sciences, to discuss why patient-scientists are a valuable perspective in medical research, and what role they play.
A Mayo Clinic podcast for laboratory professionals, physicians, and students, hosted by Justin Kreuter, M.D., assistant professor of laboratory medicine and pathology at Mayo Clinic, featuring educational topics and insightful takeaways to apply in your practice.
(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)
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please email any suggestions
to mcleducation@mayo.edu,
and reference this podcast.
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