Welcome to the program. I'm your host
Neal Howard here on Health Professional
Radio. Thank you so much for joining us.
Our guest is Veronica or 'Ronnie'
Todaro. Joining us today to discuss her
work with the Parkinson's Foundation
focusing on patient engagement programs.
Welcome to the program Veronica. Do you
prefer Veronica or Ronnie? I'll answer
the either, but Ronnie would be wonderful.
Thank yo. Thank you Neal. Well thank
you for joining us today. Welcome to the
program. Tell us a bit about yourself.
Sure, thanks. Well, let's see. I have
been with the Parkinson's Foundation for
over a decade and the journey has been
exciting and challenging as we have
worked to really improve the lives of
people living with Parkinson's. And
prior to working with the Parkinson's
Foundation, I had worked within women's
healthcare arena and really looking
again on how to improve the health and
lives of women and this string or the
thread that's run through my health
career, professional health career or
really a public health career has been
looking at ways to engage the
communities that one serves in critical
decisions that impact both researchers
as well as healthcare and the support
that they receive. With such a varied
background in healthcare, women's health,
why Parkinson's now? I think it was been
very interesting is that within the
Parkinson's arena and this really
relates to our discussion around 
advocacy is that there
have been other disease areas that were
farther along as it relates to
engagement and advocacy of the patient
community like
women's health and women's reproductive
rights, on HIV/AIDS, even heart disease and
women. But the Parkinson's community had
not really focused on advocacy in a
way that truly partnered with again what
I refer to as the ultimate consumers and
and so that's why Parkinson's now
because we are at a place where we can
really make a difference in people's
lives. And I think
I'm sure that many of the people that
listen to this,
the show are familiar with patient
engagement, it's really it's this new
buzzword, it's the new way to
really improve healthcare and
clinical research. And so right now being
in the Parkinson's space is very
exciting because we can really have
impact by including the voices of people
with the disease. When you say patient
engagement, are there different levels of
patient engagement and explain how it's
much more than simply paying attention
to what your practitioner is telling you?
Right. Exactly, exactly.
Well patient engagement means is
truly being a partner with the patient
or we also at the Parkinson's
community shy away from using the word
'patient' and referred to 'people with
Parkinson's' as people with Parkinson's.
Andthe reason why it's we're
looking at this new paradigm is that by
bringing people into the fold in
research decision-making and healthcare
decision-making, it results in
better outcomes. And so when
we look at patient engagement for
example within the Parkinson's
Foundation, we're looking at a program
called 'Pair Parkinson's Advocates and
Research' and the goal of this
program is to have people with
Parkinson's collaborate
shoulder-to-shoulder with research
professionals to look at different touch
points within the clinical
research enterprise such
what are the needs and priorities
for research? How are we developing a
study protocol? How can we ensure an
informed consent form is as good as it
can be to make sure that recruitment and
retention is really where we want to see
it? And so what we're doing and with
this specific program with Parkinson's
Advocates and Research is really
ensuring that the voice of people with
Parkinson's are included and what's so
interesting is that when you engage in
this matter, you really see
change you know for example, we have
partnered with various bioscience
companies and brought people with
Parkinson's to the table and had them
engaged as advisors. And we've been able
to identify modifications and a study
protocol that will ensure that a study
recruits faster,
that's just one specific
example of how when you truly partner
with patients, you can make change that
will impact in
treatment and care. What types of
engagement protocols exist? You have
people living and dealing with
Parkinson's, a complicated condition, how
do you get folks to navigate the
complicated world of research and trials
and things of that nature? Is there some
type of a protocol for these folks with
Parkinson's to be able to engage
effectively with researchers? That's a
great question. And what we have done in
terms of ensuring that there is an
effective engagement is that we have
staff who really serve as
matchmakers or brokers and make sure
that we align a project with the right
person with Parkinson's
and also every project
is unique, so for example we have
advocates that are payer advocates,
Parkinson's Advocates and Research who
will work with the FDA and that would be
a certain type of individual. You have
someone who may serve as a
co-investigator on a study and that
would be a certain type of individual.
And so there isn't one
specific protocol, it really is
unique to the project and to
the outcome that's desired.
How much do you borrow from say other
industries as far as employment
engagement with upper management or with
folks on the floor? Are there any
similarities say with the airline
industry, the auto industry or the tech
industry as how you get people dealing
with Parkinson's to engaged, who want to
engage? That's an interesting question.
And I haven't ever thought about how
we may parallel the work that
is going on in other industry areas.
I will say though that this
idea of
including people with a specific unit
disease, it's not unique and that we
borrowed from the breast cancer
community, they had started a program
that was similar a number of years ago.
And so again what we've done is
looked at what is occurring in other
disease areas but not necessarily
outside of the healthcare
industry so to speak. What type
of reception have you gotten
from doctors and researchers when
you suggest that they work
shoulder-to-shoulder with the folks that
they're going to be doing the research
trying to help? It's very interesting. The
response that we've gotten from
researchers has been tremendous
as a matter of fact and I can give you a
specific example is that within the
Parkinson's Foundation, one
component or one tenant of our mission
is to better understand Parkinson's. And
through that, we fund
investigators and their
project and we've pulled together a
group of review panel, grant review panel
and include people with Parkinson's in
this panel. And initially, some of
the researchers or the scientific
community is skeptical
in terms of being perhaps
not as comfortable as they wish to be
sharing insights or thinking that what
they may say will be too harsh for a
patient to hear directly in regard to
the disease and progression. But what we
found is that the person with
Parkinson's will sit in the room and
really share that like gem of
information or that one piece that will
be in an 'Aha' moment where you'll say, 'I
never thought of it that way'.
And we've done surveys of
researchers after they've participated
in a patient engagement experience let's
say. And you time after time, we hear
how this has changed
their perspective and we've also hear
that they will do this again on their
own. We have to remember that
there are two experts
in the room - one expert is
a researcher, a medical
professional, someone is dedicated his
or her career to this but the other
expert is someone who's living with this
disease 24 hours a day, 7
days a week.
We'd like to get some more
information, where can we go online and
learn more about how to better
facilitate patient engagement across the
board? Well, I would encourage people to
go to our website www.parkison.org as well as people
should feel free to call at healthline which 1-800-4PD-INFO or
1800 473 4636.
I appreciate your time and coming in and speaking with us today. 
You're welcome.
Thank you for having me. It's
been a pleasure just to speak with you.
I enjoyed our conversation, thank
you. Looking forward to more, thank you
so much. You've been listening to
Health Professional Radio.
I'm your host Neal Howard. Transcripts
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