1/2019 NACNR – Patient-centered technologies to provide supportive treatment supervision


[music playing]>>Sarah Iribarren: I’m very
excited to be here and for this opportunity
to give an overview of my
technology-focused research. As was mentioned,
I have pursued ways to develop and evaluate
patient-centered technology to support health outcomes. And the main purpose
of my talk today will be to provide an overview
of the technology, specifically the K23,
and I was interested to see that I was one of two
of the K23’s that are focusing on technology.
But in order to get to that, I first have to describe
the trajectory and what I’ve done to build
on the research that I’ve done in the past and leading up
to where I am currently. And I also want to answer
the question “Why mobile?” I think a lot of us
have various ideas, but why mobile has the real
potential and promise to really help solve
some of the challenges, not just nationally
but globally, and why tuberculosis
treatment adherence is a really important
use case. And then,
I’ll also describe briefly how we’re thinking of building
for future adaptability and kind of keeping in mind
what was just described earlier on how we could go
to the next step. And then, I’ll end
with next steps within my K and future research interest. So, mobile technologies,
as you’re all aware as our mobile phones
are part of our attire, the technologies
themselves have advanced. They’ve become cheaper
and more accessible, as well as network coverage and
the access to internet globally has really increased
in a short period of time. And it’s changed the way in which we’ve interacted
with each other, how we’ve managed
our day-to-day lives, and also, more recently,
we’re using it and optimizing it
to improve our health outcomes. So, mobile technology really has
provided this opportunity to think
about new and innovative ways to increase patient engagement
in self-management, to deliver health
in a different way outside of the brick
and mortar healthcare systems, and it’s also
cost effective, right? How many of you have heard that
or believe that? So, that was one of my questions
that I had. So, is mHealth
really cost effective? I had been reading about it,
hearing about it. So, one of the projects
I worked on was to lead a systematic review
to look at the evidence within the literature
to identify if there are — if we can actually
make this statement. And of the nearly 6,000 studies
that we reviewed, most were excluded
because they did either state that there was
cost effectiveness but didn’t actually
do an evaluation. So, of those that we reviewed,
there were 39 that had either full
or partial economic evaluations that we were able
to include and analyze, and the majority did indicate that the intervention
was cost effective or cost savings
or beneficial at the base case. But there was
a lot of variability in the types
of mHealth interventions and also the types of — in the qualities
of the economic evaluations, so I still feel
that this is an area that needs to be
further assessed and pursued as we go along. For me, one of the first
patients that I met with active TB was a young woman
in her early twenties, and she had just recently
lost her 15-month old child. And it was a real — you know,
it was very impressive to think that somebody this day
and age with a treatment that we’ve had for decades
could go through this. She was young and vital, and not
until after the child died was both the child
and herself diagnosed with TB. So, that left an impression. And it’s also, even despite
we have this treatment, it’s still one of the top
10 causes of death globally. Over 10 million people come down with the active disease
every year, and it’s long been estimated
that at least a third of the world population
has the bacteria, which means that there is
a large potential reservoir. So, we’ve come a long way, but it still also very much
disproportionately impacts those that are already
marginalized that have, you know,
if you think of refugees and migrants and poor people
living with HIV. We’re all susceptible
but there’s really a high, high rate
of disproportionate impact. And there are some similarities
to other chronic diseases in that the treatment is long,
it can be challenging, and patients
do experience challenges along the way that can impact
their treatment outcomes. And the World
Health Organization has unfortunately
been reporting a decrease in treatment success rates
over the last number of years, in some areas
worse than others. And there has been a call
for developing new strategies in order to impact treatment
outcomes with this disease. And really mobile
and digital health has been on the forefront
of this discussion of trying to think of ways
that we can utilize these advanced technologies
within the pocket of nearly every person
on the globe at this point. And this is particularly
important that you can see that the multidrug-resistant TB has now been recognized
as a public health crisis and even a health
security threat. So, this is the start
of my trajectory. I hope to one day have a long,
more expanded trajectory, that we just recently saw.
But my — so, I’m in the early stage
as you can see, but I actually started
before this. As an undergrad, I did a year
abroad in Ecuador in a program focused on health
and environmental issues of Latin America, and during that time
I volunteered in a clinic that was ran by
two indigenous women that had a medicine man
or a yachak, and a nurse midwife,
a traditional midwife, and two fantastic nurses. And really, this was
a formative experience that led me to think
of how, you know, and saw how versatile
and vital nursing was to healthcare systems,
and it’s what led me to nursing. And I will talk about the other
steps of my trajectory as I go along
in this presentation. So, as was mentioned,
I was in my doctoral studies. I continued my interest
in global health and was fortunate to be the second Fogarty International
Clinical Research Scholar, stationed in Argentina
at this research institute. And one of the main studies
that I helped design and conduct was to try to understand
this blue line, if you can see that. That blue line
is treatment success rates. And if you can see, it doesn’t
go much above 60 percent. And so, this is one area
where treatment success has been consistently low
and still is. So, we conducted
a qualitative study, looking at what the barriers
and facilitators were from the perspective
of those at the front line. We interviewed patients,
TB teams, directors
at the local, regional, and the national TB level or national TB director
of the time. So, we wanted to identify
what they felt were the barriers
and facilitators, but also to see how treatment
was being delivered. And a main summary
of the results were that patients
were receiving treatment by self-administration and they were being concentrated
at larger facilities where they received
only self-administration. And if you know much about TB,
there had been a movement, and it’s still direct adherence,
directly observed adherence, or directly
observed therapy, DOT’s, has been
the recommended strategy, although it’s very challenging
in many settings and is not being done. But we felt that — we concluded
that there was a need to provide
patient-centered support to those receiving
self-administration rather than changing
the system as it was. So, I returned to my doctoral
studies and worked on — I continued collaborating
with some of my colleagues there and I proposed the idea
of doing a — developing a texting-based
intervention for those receiving treatment
by self-administration and returned to Argentina. I worked with patients
and the TB director at the regional level
and other colleagues there, to work on a study
that looked at, you know, how to develop
educational messages and we — it was guided by the information motivation behavioral
skill model, and also to provide
interactivity as needed as they were going
through their treatment. And for this presentation, the overall
higher-level findings were that it was feasible. Almost all patients coming
through had a mobile phone. This wasn’t a big surprise, but the majority
were identifying that they had a very low
understanding of TB and its treatment,
and how to go about, you know, what the importance
was for completing treatment. They also reported
acceptability statements such as they did feel
that there was somebody there, that they were cared for,
and there were a few that shared their messages
with others, family members. I recall one talked about how their family
wouldn’t even call them because they had a lot of fear
and misunderstanding of TB, so she shared some of
the educational messages and was able to,
you know, teach others about that
it was curable and treatable. Overall, we did have an increase
in treatment success in both of the groups, and then through
the socioeconomical evaluation, I did identify ways in which we
could further advance and modify and take the next step. But it was also interesting
in that patients were starting to transition
from texting to mobile app-based
communication platforms such as What’s App,
for example. That’s a globally
very popular platform. So, my next step was to go on
and do my post-doc, and I had a wonderful
opportunity to work with many other colleagues
and researchers doing various other types of
technology-supported research. For example, I worked
with a researcher and a team to understand the needs of caregivers
of individuals with Alzheimer’s and how to develop a platform
and address their needs. Another team I worked with
was to help identify the self-management strategies
for symptoms of individuals living with HIV. So, during this time,
I also needed to think about, you know, I was thinking
“What’s next? What can I do?” And I wanted to do
an evaluation of what’s out there
in the marketplace so far. So, in this systematic review,
I was able to identify that there were
24 mobile apps available that were TB-related. The majority of these
did target healthcare providers. They either had ways of,
you know, helping identify the dosing,
tracking the patients, having various, you know,
guidelines, all of which
are very important, but none of them
were focused on patients to help support
their treatment progression. And, in fact, two of the ones
that you could say were more patient-focused
provided information on herbal remedies
and links to natural healers, which certainly wouldn’t be
a part of the guidelines. So, as a next step when I
started my current position, I submitted a K23
to look at developing and evaluating this next step of
a mobile or mHealth intervention by converting what we had
learned and the experience that we had previously
into a mobile app. But I also wanted to add
a direct adherence monitoring component. And I’ll get to that shortly,
but that was looking — I’ve been collaborating
with a bioengineer on adapting a lab-based test
for home use. And it’s a paper-based test
that detects direct adherence within the last 24 hours. So, we started with mockups. We used our experience,
our background, the findings from the prior
research and colleagues’ input, and then surveyed
human-centered design in engineering trainees
and graduates from the University
of Washington, and they reviewed
the mockups within a survey. I also translated it
into Spanish, and it was reviewed
by my colleagues in Argentina as well to provide initial
feedback on design and content. We also used — I worked with a human-centered
design and engineer expert to think of, you know,
the process of, you know, this is a long
and iterative process and some of the first stages
were doing, you know, the basic sticky notes of thinking of
how the flow will be. We did diagramming of what
the functionalities might entail and what would make the screen
flow easy and intuitive. The next steps were based
on the feedback of the experts in both design and TB
to build a functional wireframe. Has anybody done this process or know what
a functional wireframe is? So, there’s a number
of different software programs that allow you to do this,
but it’s a way to rapidly and iteratively make changes
to a design by actually adding
direct notes to the spot that you want
to make changes, so you can make
a lot of quick changes before you even get to the
costly programming aspect of it. So, this is some initial stages
that we were looking at. And from that, we did develop
a base beta functioning app, and aim two was to go
and do focus groups and field testing with patients
in active TB treatment. And the aim here was to further
understand their experiences upon diagnosing
what their needs were in their initial stage
of starting treatment, and any recommendations
that they had, and also to get their feel
on using this paper-based basic test
to detect direct adherence. They described experiences
of lengthy diagnoses up to even a few months where they had tried
numerous types of treatments and gone to various
healthcare providers until they were
diagnosed with TB. They then had experiences
of fear and initial depression. They reported many questions
at the beginning of how to, you know, make the next steps, what to do,
and their biggest question was how to prevent
transmitting it to other people. And they reported that
their main source of information was from the internet,
and that they did identify some contradicting findings
of information and education. They had lots of
recommendations for those that would be
starting treatment, such as this one here, of “Not to worry because
there is treatment, and don’t be frightened.” In regards to the app itself, they did describe it
as being useful and relevant and a needed location
for quality information, and they had a number
of great recommendations on how to improve the flow and think about more quick
simplified reporting, different ways
to interact and linking, and they described some of the
challenges with photo upload, that an image upload,
color changes, that I’ll describe
further our response. And these are some
of the initial responses of what we were taking in as far
as the patient recommendations of really thinking about
what views they want to see, and quick views of their
trajectory and their history, a quick way of going through and reporting all of their
taking the medication, if they had any side effects
or symptoms, and then a quick list
of educational messages and links to other videos
and education. So, this is still — this is
actually an older version. We’ve done quite a few
modifications from there. And in regard to planning
for adaptability and next steps, these are some of the things
that we’ve been thinking about. We’re building the app
and the system using open source components
wherever possible, and open standards
that will allow at some point to be able to quickly adapt
to either, for example, healthcare records
or surveillance systems so it could be
directly integrated rather than be its own separate
system or standalone system, which would not be our hope. And then, also, the team
that I have been working with has developed a number
of different tools and technologies
for various diseases globally, and have integrated, you know,
the highest standards of security
and authorization as well. And an internationalization
or localization, has anybody heard
of that terminology? I think the other
big thing for me that I’ve been learning
a lot about is just, it’s a whole other language. The programming languages
of how to interact, the development, this has been
a fantastic experience, learning experience for me that I’m still learning
new terms every day. But this internationalization
or localization is what we see
and feel every day, you probably just didn’t know
what it was called, but it’s what makes
a user feel at home using a tool,
using a device. So, having it
automatically go to, you know, the time zone,
your language of choice, the formatting,
just automatically. So, here are some images
of the direct adherence paper-based test. It started off
as a test tube test. We converted it
to a cartridge and this was collaboration
with the bioengineer at the University
of Washington. And from some of the feedback
from the field testing, we did — I hired two incredibly
smart bioengineer students. It’s always fun
when you work with people that are much,
much smarter than you. But they knew
a lot about chemistry, and what I wanted to know
is how you can understand some of what wasn’t understood
about the chemistry, and possibly modify it
to help improve speed, the color changes, and we actually added
a component that’s being used
in the textile industry that helps dye
adhere to a material. And so, that’s giving you,
you can see in the third one, a clearer line
which wasn’t there before. So, I’m excited about this and
we still have a ways to go here. But next steps
are the pilot study, which I hope at some point I’ll have the opportunity
to present on actual findings and next steps there,
but that’s upcoming. And as far as future research, I hope to continue to refine
based on the findings, based on patients
and expert feedback, and be able to conduct a pragmatic randomized
control trial that would test
the intervention, you know, with
the appropriate sample size. I also plan to continue to work
and collaborate with the bioengineer for further modifications
of this test strip, and there’s another bioengineer that has been working
on a cough sensor that could be
a fantastic solution for one of the big questions
that the patients have as far as when they’re
no longer contagious. And there have been
some studies that have shown with being able to identify
and detect coughs, a decrease in cough frequency, it does correlate
with a decrease in infectivity
or contagiousness. And there is also
a great resource that I’m looking to investigate
and explore with a colleague
at the University of Washington that’s been building a data
set where we’ll be looking at the expenditures
and burden distribution, in particular
in rural settings. So, I hope that I’ve conveyed that I’m very interested
in continuing to explore in particular nurse-led,
technology-focused research, but I of course would not be
here today without many of my — these are the majority
of my mentors. I know I’ve had
many more along the way, but they’ve been fundamental
to my experience, my training,
so thank you to all of them. I also want to thank NINR for the many opportunities
for training, and in particular, Dr. Banks for
his support throughout the many, you know, fun training grants
along the way. So, thank you again
for this opportunity and I’m happy
to take any questions. [applause]>>Female Speaker: Thank you
for all those wonderful examples of how an individual
coming into the nursing career
and faculty position can build on that research
and start the career so that she can, as you said,
take it further in the future. So, at this point, if we have
a few questions for her. Yes?>>Female Speaker: I have one. So, congratulations.
Congratulations. That’s great work
and very, very exciting. You’re going to have
a great career. I have a question for you
and then also maybe for Dr. Diana
and other presenters in general. How do you advise investigators
to work in this space when the technology
is continually changing? How do you even think
about writing a grant in that?>>Sarah Iribarren: Well, I can
quickly touch on that because I think
I’ve seen that personally, that texting was considered,
you know, an ideal mode to address and be in contact
with the individuals and then they started
using other technology. So, I think you do —
myself, I’m trying to build
on what we learn because some of that
understanding and findings is very applicable
to the next technology, but I think the other strategies
are some of what I touched on as far as using software that you could just rapidly
make new iterations. I mean, it even looks
totally different now. So, I think using,
and I didn’t really touch on it, but as far as,
I have it included, the framework
of agile development is really important
in this type of work, and using many colleagues,
collaborators.>>Female Speaker: Yes.>>Male Speaker: It’s a great
and difficult question. Before NINR, I worked in the
National Institute on Drug Abuse and the focus was
on drug prevention, which I have done myself
for a number of years. And most of what was happening,
and still is, are intervention-based
product or projects that have either
an educational focus or some sort of
psychosocial focus. And when I started at NIDA, people were coming in
with applications to translate paper-based
or manual-based interventions into CD-ROM’s, and over the years they then
come in with DVD’s, and then they come in
with web-based application, then they come in
with mobile apps. I don’t even know
what they’re doing now. And, it’s not a bad trajectory,
because if you’ve got evidence behind what you’re trying
to promote, then you just have to show that it can transfer well
to another technology. The challenge is, and I hear
this all the time in reviews, and it’s especially
true of SBIR’s but it’s true of others too, getting them to see that another
app or another something else is going to somehow
help the field or work better than something else
that’s out there. I’m sure Sarah has dealt
with this very directly, and what I heard is a very,
very creative way of using texting
and other things. So, I always tell them, “Look, the worst thing
you can do is say what you have is an innovative
methodology or technology,” because they’ll say, “There’s
a ton of these out there.” What you can do is you can talk
about a way that you’re utilizing it or adapting it
or in some way modifying it, so that it takes the field
in a different direction. I say that as if it’s easy,
which it’s not. But that’s what seems to have
had the most success. [music playing]

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