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In this episode of “Lab Medicine Rounds,” Justin Kreuter, M.D., sits down with Cori Berg, M.S.N., R.N., instructor in nursing for the Center for Individualized Medicine in Rochester, Minnesota, to talk about challenges of patient education and helping patients understand relevant medical information.
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.
(upbeat 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 Cori
Berg, instructor in nursing
for the Center for Individualized Medicine
at Mayo Clinic in Rochester, Minnesota,
to talk about the importance
of patient education.
So thanks for joining us today, Cori.
- Hi. Thank you for
having me, Dr. Kreuter.
It's a privilege to be here.
- This is wonderful.
I love kind of getting
different perspectives
on this podcast.
And I think for many
of us, as pathologists,
sometimes we like to call
ourselves the doctors' doctors.
Certainly that extends out
for allied health medicine
and lab medicine as well.
We're really educating a lot of the people
that we work with, including
sometimes patients.
And so I'm kind of really
excited to explore this with you.
But maybe to start off,
what's your origin story?
How did you come to kind of work
in this unique health setting
of educating patients?
- Sure.
As a young girl, my mom's
only sister was diagnosed
with breast cancer at a young age.
She was in her early 30s.
And so I remember treatment
would often leave her
lethargic and nauseated.
And after a brief stint
of being cancer free,
she ended up having a recurrence,
and she ended up dying in her early 40s.
So in March of 2010, a
few years after her death,
I was 25 years old, newly married,
and I had picked up a magazine
article in a small clinic,
and I read about a young female
who got tested for a genetic mutation
that increased her risk of breast cancer.
And she had a prophylactic mastectomy.
And she also had Jewish ancestry,
Ashkenazi Jewish ancestry.
And so I immediately
called my mom, and I said,
"Is this something that Aunt
Rosalie could have had?"
And we were unsure, but I said,
"If this is something that I could have,
I'd wanna do the same
thing and reduce my risk
because I was severely impacted by it."
So I immediately called my physician
and scheduled an appointment.
And at the appointment,
I was not a nurse yet,
and I didn't have any
information about genetics
or any risks associated
with getting tested or anything like that.
And the doctor was
supportive of my decision,
and honestly he said, "Okay,
I'll get the genetic test ordered,
and if you're positive, you snip, snip,"
like, holding scissors
right in front of his chest.
And although I was familiar
with the doctor, looking back,
I just don't think that that
was the most professional
or informative way of
conducting an appointment.
I was a young female,
and I was still very emotional
from the death of my aunt,
and I would've benefited from statistics
or risks from any genetics information
or even information on GINA,
which was enacted in
2008, and this was 2010.
And then I went straight to the lab
without talking to my husband or my mom.
And I knew the lab tech as well.
And she looked at me and she said, "Honey,
do you know what you're doing?"
And I told her, "Yep, this
is what I plan to do."
And she goes, "Well, those
are part of your womanhood."
And I just collected all of my
winter gear, and I went home,
and I called Mayo Clinic Rochester,
and I scheduled an appointment
with the breast clinic,
met with them, and they
scheduled an appointment
with a genetic counselor.
And the genetic counselor was able
to create my family pedigree,
and it showed my Jewish
ancestry on both sides.
And the GC said, "Cori,
we see that you have
cancer in your family,
but not enough.
So I just don't think
you're gonna have BRCA."
'Cause that's all that they were aware
of at the time that increased
your risk of breast cancer.
I said, "That's fine, I wanna get tested.
I don't care if I have to
pay for it out of pocket.
I just wanna know.
And just call me with the results
'cause I live two hours away."
So the genetic counselor called me,
I remember she was crying,
and she said that I was
indeed BRCA2 positive,
and my surgery was a month later.
Yeah.
- It's a really powerful origin story
of getting into patient education.
And as you were telling it,
I was reflecting on all the times
where I have failed the way
that I talk with patients.
And in my case, I see a
lot of that coming out
because of how I'm
maybe more often talking
with different groups of people
and sort of get used to talking
about things in certain ways
and not making that reset
and that connection.
And so I think sometimes
that's where my failures come.
And hopefully, when I catch them,
I try to see if I can try to say,
"I apologize, I think
I'm saying this wrong,"
and trying to catch that.
I'm kinda curious,
now being a nurse for several years
and really taking a frontline
in educating patients,
what are some of the the common ways
that you see healthcare really fail
to successfully educate patients?
- Sure.
So yeah, that really inspired
me to go into nursing.
So after that, you know,
after my surgery, I
moved back to Rochester.
For various reasons, I was
born and raised in Rochester.
And I worked at Mayo Clinic
while I was going back
to school for nursing,
and I didn't stop until I got my master's.
And eventually I did get a job
at the Center for Individualized Medicine
where now I can teach patients.
But obviously, besides my own mishaps
with my experiences,
I know that primary care
providers have very little time
to stay up to date with everything,
especially genetics or genomics,
and the latest in genetics
and their associated risks.
In 2010, we were really only privileged
to know about BRCA1 and BRCA2,
and it was patented at the time.
So Myriad did have that advantage.
And now we're so much more aware
of other genes that increase our risk,
but not only for breast cancer,
but for other cancers as well,
and there's a major overlap.
And then some of those genes,
we are aware that they maybe indicate
that we should be getting
preventative surgeries, correct?
And then other ones, maybe
it's just surveillance.
So when we're going to
a primary care provider,
maybe they don't have
the latest information
because it's not because
they're not proficient,
it's just that they don't have the time.
So I do think that it would be great
if they could have a genetic specialist,
if they're a smaller
area in their department
or in their hospital,
but if not, stay, you know,
refer to a genetic counselor.
That is what I would say.
At Mayo Clinic, our
genetic counseling teams
across the enterprise are growing,
and they can help
patients assess for risk,
understand their risk, the implications,
the testing process,
results, treatment options,
address emotional concerns,
not only for the patient,
but for their family members.
They're used to advocacy,
and they can refer
patients to support groups.
So I am obviously an advocate
for utilizing genetic counselors.
We are also obviously
at Mayo Clinic privileged
to have the Center for
Individualized Medicine,
where I work.
It's built clinics to allow opportunities
for patients to be seen
sometimes the same day
instead of waiting months to be seen
for a genetic counselor
because this enables
patients to be seen faster.
And we both know that genes
can determine the type
of chemotherapy or treatment
that patients need to be seen,
so precision medicine, or
individualized medicine,
as many people call it, and
the regimens that we follow.
But I've said this before,
and I will say it again,
that I think healthcare
providers can get desensitized.
And, you know, as a nurse,
I see it quite a bit.
We continue to see the same
indication over and over.
We may think it's the same
patient over and over.
I think of each patient as someone,
you know, I think of each patient
as someone I love very, very much.
And I think of all of my
education as my grandma.
So would this benefit her?
How does she deserve to be treated?
So put a person behind every indication.
Put your special person
behind that indication.
So in lab medicine,
this would be similar
to a specimen, you know?
Keep that in mind behind every specimen
that special individual to you.
So you're spending that time
on that special individual to you.
It's not just blood,
saliva, whatever it may be.
And in that case, every
indication is a patient.
- You know, a theme I
hear in your answer there,
you know, when you're
talking about time and,
you know, that's not to
say people aren't competent
in their work, but just
there are challenges
that we're trying to navigate.
Time, the complexity, the
rapid pace of innovation.
And I think your wisdom there
of making sure we connect
with people who may know
the latest and greatest,
and just verifying, you know,
is this information correct?
Is there something more to offer?
I think always that reaching out for help,
that's something certainly
we should probably do more of
in our practices as a cautionary thing.
I'm kind of wondering about,
you know, given your work
in the Center for Individualized Medicine,
in talking about educating patients,
I imagine two things I'm
kind of curious about.
How do you navigate, I mean,
the complexity of stuff
that you're talking about?
I mean, and you're individualizing it,
so it's really talking
to that specific person,
as you're putting it, that special person.
And also, these things
might change over time.
And so like, you know,
maybe somebody should revisit
this at some point in time.
I'm kind of curious
how you navigate those.
- Mm-hmm. Yeah, that is complex.
So things do change quite often.
Especially, you know, with technology,
things change as well.
So we find that that happens a lot.
So we have to revisit things.
Education materials need to change.
We find that we're
going more and more away
from print materials.
So that means that they
want to do more PowerPoints,
but that gets away also from face-to-face.
So that can take away from
that hands-on communication
with the patient as well.
So that can become a challenge
because you don't know
if they're absorbing the information
also that you're teaching them.
So that is difficult,
but, you know, making sure
that you're hopefully
answering any questions
that you have.
And that's when you wanna make sure
that you're delivering
different models of education.
So written and oral.
- I hear what you're saying.
I think that this idea of,
by innovating and like, instead
of having printed materials,
you're then able to really update stuff.
I imagine that the PowerPoints
that you're doing are
a lot more up to date
than like, something
that was on a print run,
and it's like, well, that
was the previous edition.
We haven't run out of those yet.
But then at the same time,
you're bringing up the
point that, you know,
with this innovation, which
has some good side to it,
there's new challenges that
are introduced in that.
And what I'm hearing you say
is that impersonalization that then comes
into the relationship.
- Yeah.
And another thing is in
education we're advised
to build education at
an eighth grade level,
which is difficult when you have been
in education beyond an eighth grade level.
And then not everyone is
at an eighth grade level
of education, right?
So we have to understand
that that is fluid.
And so I think that it also comes down
to just having a conversation
with your patient, right?
So understanding where they're at.
Maybe the patient isn't ready to learn.
Maybe they're still stuck
on the information that they learned
in the last appointment.
You know, maybe they just had
to navigate a difficult diagnosis.
Maybe they're understanding
that they just received a diagnosis
that they are, you know,
did get a BRCA-positive diagnosis
that they could have passed on
to five children or 50%.
So they could have passed it on
to three of five children or
two of five children, right?
So they have multiple appointments,
possible screenings, possible surgeries.
So we have to keep that
into consideration too.
So that's why I do think
that having the print
material with the pictorials.
And I am a strong advocate of analogies
because I think when you are
with your family members,
you're not always bringing
those brochures with.
And so having an analogy
stuck in the back of your head
is sometimes helpful
because then you're like,
"What did that nurse say,
or what did that doctor say?
Oh yeah, I can pull that out."
And then that's a good explanation.
I think one thing that we do see a lot,
to relate it back to the lab,
is we see that patients really struggle
with the difference between
somatic and germline testing.
So like, to think about grandma again.
So let's say a 78-year-old
grandma goes into the clinic
and is diagnosed with
breast cancer, right?
So as an educator, it's an important
to give her multiple
learning styles, right?
But we are probably gonna be doing tumor
or somatic testing on her.
But she goes home
and tells her 18-year-old
granddaughter about this.
The 18-year-old granddaughter
came home and said,
"Well, my best friend's mom
who's 43 just got diagnosed
with breast cancer, and
they're gonna do germline
and somatic breast cancer testing
'cause they're not sure that her,
you know, family has breast cancer."
So grandma should probably have
a little bit of information
to explain to the 18-year-old
that they don't think that this,
that grandma's breast cancer,
is a germline variant, right?
So the 18-year-old doesn't have
to get too anxious about it.
But I also think that, you know,
we also struggle in education
that there are only certain
resources we can put
in print, right?
We can put certain things
that they can refer to, but as a provider,
I think that it's important,
if you feel like something is
gonna be a helpful resource,
that patient may appreciate,
if you think it's gonna
be helpful for them,
for you to physically write it down there.
And then when they're ready
to absorb that information,
they'll go to it because
they felt like you thought
it was gonna be helpful for them.
So if I feel like a
support group was helpful,
I'm gonna write that down.
But Mayo Clinic may not have vetted
that support group per se
or a different institution.
You know, then-
- It really seems to come back
to you're advocating for that person.
- Yeah.
So I think that there's
just different avenues
that could be taken,
and it's not always
black and white, right?
- You know, that kind of touches
on this question I have
that I think probably
all of us can relate to,
is when we're educating somebody,
you know, sometimes we're
not getting the sense
that they're understanding
the information.
Or if we're asking them to,
you know, say back to me,
explain to me what we've
been talking about,
it's clear that they're
not making the connection.
And I'm curious, you know,
how do you navigate
those situations, right?
Because you really are doing a complex set
of skills there of, you know,
kind of understanding, diagnosing,
or trying to figure out
what the challenge is
with the information.
How do you navigate that?
- Again, I think that's
having that conversation
with the patient and
doing a teach back method.
I mean, it goes back to that.
It's just not quizzing them
because they're gonna feel
uncomfortable, you know?
Anytime you have a quiz or test at school.
Maybe some people like that. I did not.
But just so you know
that they're retaining something, right?
And again, providing resources
'cause they may not be ready
to obtain that information
or to soak it in, and that's okay.
But also, you know,
we have the patient
portal providing material
in the language that they understand.
So we do have a diverse community,
especially in Rochester.
So we wanna be giving materials
in a language that they understand, right?
We want to be providing
materials for family members.
So I've worked on BRCA for males.
So if we are gonna be diagnosing a female
with a BRCA2 mutation,
we do want to let her know
that that is something
that she could have passed
on to her sons, right?
Or that her brother could have.
So maybe we give her a pamphlet
to hand to her brother,
or to hand to her sons, if
they are old enough, right?
So those are things to consider as well.
It's not just the patient themselves,
but care for their families
because that's what
they're gonna think about.
I know that, as I've gotten older,
my thoughts have changed too now
that I have children of my own, right?
So yeah.
- It's wonderful.
You know, so the importance of education,
educating patients,
has always been around.
And like you say, you
have your own family now,
and you've seen a lot of things advance
with the Center for
Individualized Medicine.
And I'm curious,
what does the future of patient
education look like to you?
- Yeah, so kind of as evidenced
of us sitting here right now
on a podcast over the computer,
it's definitely enhanced,
this last few years was
enhanced by technology, right?
So it has taken away some
of what I appreciate
most about healthcare,
some of the personal touch.
I'm giving you a little clue
into what my love language is.
I'm huge into the love languages.
I appreciate everyone else's
love language, though,
if it's not what mine is.
But in all seriousness,
I do think that there's
something to be said
for the personal touch experience provider
and even nurses are taught
to educate their patients.
You know, it may not be
like opening up a book
like a teacher educator,
but our time with nurses
and doctors has decreased
over the years, and it
will continue to decrease.
I know our time with genetic
counselors has decreased
because we just don't have the teachers
to teach genetic counselors,
so they can only take so
many in their programs.
So we need to be more creative
and find more efficient
ways to educate patients.
It means utilizing more technology.
And I understand this must
change with the times,
and hospitals are driven
by reimbursements.
I realize that it may affect
patient satisfaction as well,
but we have to be,
we have to not hit them in
the face with the technology,
but establish relationships
with them first.
So meet the patient first
before we're just like,
throwing the technology in their face.
It's important to establish
those relationships.
Another factor is patient expectations.
Those are only increasing,
especially with COVID.
I think that everything's
at their fingertips, right?
So we've raised the bar.
And providing everything
digitally with that,
we have to address varied health literacy,
digital access with patient engagement
in their healthcare and their literacy.
Patients not only will expect
to see the information delivered directly
to their personal devices
and in their preferred
language, like I talked about,
but at their reading level,
and in terms that are actionable
and meaningful to their
understanding and their situations.
So it really has to be patient centered
and patient geared and to them.
So it cannot be, it's on their terms.
And I understand this makes it difficult
for us as educators to gauge
if they're understanding
or comprehending what we
are delivering to them
because it's not face-to-face
all the time, right?
So we can't always,
you know, get a great assessment.
So we want to make sure
that they're still communicating
with their providers.
So we want to make sure
that they're doing the face-to-face,
engaging maybe, you know,
via the portal or those kinds of things.
And I know that there can
be sometimes a disconnect
when it comes to electronics as well.
So we have to make sure
that not too much gets
lost in translation.
Overall, I think just
healthcare just needs
to continually focus on strengthening
and providing insightful ways
to deliver patient education,
which will be essential in
improving patient experiences
and outcomes for today and in the future.
- Absolutely.
I think that really resonates with me
about these key things for all
of us to take home with us,
about, you know, the creativity
that we're gonna have
to pull going forward,
valuing the skill of being an educator,
the idea of making things actionable
and meaningful for the person.
'Cause we understand
that for adult learning,
that is so fundamental for
that learning to happen.
And then also, I think you're spot on,
I see this, and I struggle with it myself,
this idea of, you know,
disconnected education.
There's not that opportunity to check
in with the learner in the same way.
And so it really demands creativity.
- Mm-hmm. Yeah.
- So thanks for rounding
with us today, Cori Berg.
- Thank you.
- Thanks to all the listeners
for taking the time to
round with us today as well.
We really appreciate
you sharing your story
and also helping us remember
some of these key factors
that make our education with colleagues
and patients so important.
- Thank you, Dr. Kreuter.
- So to all of our listeners,
thank you for joining us today.
We invite you to share your thoughts
and suggestions via email.
Please direct any suggestions
to mcleducation@mayo.edu
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
through insightful conversations.
(upbeat music)