Trends in Transitions of Care: Transforming the HF Patient Journey: Live Session Recording


(optimistic music) – So my name is Dr. Nancy Albert. I come to you from Cleveland
Clinic in Cleveland, Ohio. I’m an associate chief
nursing officer for research and innovation, and more
important to this discussion, I’m an advanced practice provider
in a heart failure clinic for the Kaufman Center for Heart Failure. And then Dr. Kahn is gonna
be giving an overview of the Rise Above Heart
Failure pilot program. Then then we’re gonna
have a panel discussion, and I’ll be introducing our patients and our providers to you. And we want you to be able
join in the discussion, so you’ll be able to
ask questions as well. The good new is we have a lot
of very engaged organizations and a lot of very committed
people who are helping us to bring this together. I’m just gonna read to you the
five patient-centered goals, or the unmet needs, and then
the goals that came about because of the unmet needs. The first one is
patient-centered decision-making. The second unmet need of
the five that came about when discussions first
started was empowering and supporting you, the caregivers, if you’re a caregiver in the room. The third unmet need was
personalized education and support. The fourth unmet need
was symptom recognition and management, and the last unmet need was coordination of care. – So the Rise Above Heart Failure pilot has several goals based on
those stakeholder unmet needs. Number one: reducing hospital readmissions among patients with heart failure. And really, this is the primary
goal in order to improve quality of life among
patients with heart failure; increase patient knowledge
of heart failure, including understanding of pathology, symptoms, and treatment; to improve self-management
of heart failure through clinical and
technology-based approaches; and then to improve patients’
sense of empowerment, to self-manage heart
failure post-discharge. Really targeting all of those unmet needs. We know that there are both
individual and hospital-based approaches to an
intervention such as this. It’s not just on one
individual or one provider, and that’s really where the
Rise Above Heart Failure pilot is trying to provide support
on all of these levels. So the pilot program
itself has three hospitals that are participating in
the Dallas/Fort Worth area: JPS Health, Medical City, and THR Presby between July 2019 and April 2020. As we saw in the introductory video, this pilot is providing support
to these three hospitals through the American Heart
Association and Novartis. And the goal is to leverage the Get with the Guidelines sites to identify heart failure patients, educate patients at multiple touchpoints through the journey, and really
make this a dynamic team, time-dependent process. It’s not just one time. It’s not just during the hospitalization, but really that transition
following discharge. Drive patient engagement, as well as health care provider engagement via shared decision-making and self-management education and tools. The Heart Failure Path tools, and provide continuous
evaluation of the progress to identify a sustainable
model that can then be scaled across the country. The Get with the Guidelines
heart failure participation provides national and local recognition for hospital team program achievement, access to the most up-to-date research and scientific publications,
professional education and patient education sources, and CMS data submission for
30-day readmission metrics. The Get with the Guideline
program has published several papers that have also contributed to our understanding of
heart failure admission, and the keys that we need
to reduced readmissions. So here is an overview schematic of the Rise Above Heart Failure pilot. And I’ll walk you through it one by one. We know that there are
multiple touchpoints in the patient’s journey,
and we want to make sure that we provide support tools,
not just for the patient, or the healthcare
provider, but in a group, and make this a part of
the patient-centered team decision-making process. In the hospital, heart failure content on the American Heart
Association HeartCare Channel will provide information
about the diagnosis, especially if it is a new diagnosis. At discharge, 60 minutes of targeted heart failure education, so really providing support and
time to go over the process. Patient discharge contract, Heart Failure Path enrollment
that will provide resources following discharge, magnet
board incentive for enrollment, a discharge toolkit, and
the Heart Failure Path introductory video on the tablet. Then as Dr. Albert mentioned, really getting our patients
back into the clinic within that seven-day window, and providing a digital scale
and blood pressure monitoring to patients in need, entry of medications into
the Heart Failure Path, medication organizer as an incentive, and support for tracking medications, and use of tablet devices for education. And then really highlighting
that this will be an ongoing process. It’s not just about that
discharge to seven-day followup, but continues to be an ongoing process to prevent readmissions. While we’re focusing a
lot of time and attention in that first 30 days which
is the highest window, we know that the risk
of readmission persists even after that. Quality of life and knowledge assessments; understanding how living
with heart failure is affecting our patients; 12 heart failure education courses assigned by the heart failure team that the patient can continue
to do on their own pace; Heart Failure Path, which
allows daily tracking and input. All of our Apple iPhones
have kinda daily monitors of our steps, and our heart
rates, and we’re all getting more familiar with this, but
being able to leverage this information for the parts
of their care journey that we need to know. And additional incentives
provided at clinic appointments such as a Fast Food Advisor
and Eating Healthy poster. When we’ve done our own
stakeholder assessment for what are driving readmissions
within our institution, we really have found
that there are so many different reasons that
are both patient-level, provider-level, hospital-level, and outside of that, as well. So some of the things that
I’m often thinking about when talking with patients
and healthcare leaders are thinking about things
like in adequate social sector and social support system failure, inadequate patient
activation, or understanding of when symptoms are
developing, and biological. Some of our patients are just quite sick, and knowing that some of the readmissions what needs to be in
place prior to discharge to be able to prevent that. Here’s the chart that Dr. Albert
was speaking about earlier related to the question
of where the proportion or percentage of
readmissions are occurring. As you can see, this readmission continues from day zero, really, to day 30 from this reference in 2013, and it’s not that dissimilar now. That peak that happens at day three is not that dissimilar to any
other day around that window, but it’s quite high, and it persists. In fact, 61% of all readmissions happen in the first two weeks. One of the things that
we’ve done at Northwestern in order to do our own
type of pilot program has been using our
electronic health records to identify any individual
who’s being admitted with heart failure as a diagnosis, and provide multidisciplinary support that then allows us to deliver
both clinical education as well as leaning on some
of our health care extenders in social work, and pharmacy,
and transitional care with advance practice providers. Every patient receives a call at 48 hours, really to target that three-day mark. Not just to assess how
they’re doing, but how much of their understanding in
terms of the education, and what they need to be
taking for their medications, and ensuring that they
have access and were able to pick up their medications,
and are able to take them. They get a visit within seven days with one of our advance
practice providers, within 14 days ideally with
their primary care provider, and then within three
weeks with a cardiologist. Thank you all for your time and attention. I’ll turn it back over to Dr. Albert. (audience applauding) – Now we’re gonna start
a panel discussion, and I’d like to introduce
the panel to you. And the first person I’m gonna
introduce is Shaun Rivers. Shaun is a master’s-prepared
advanced diabetes clinical nurse specialist at
Case Management Associates Diabetes Wellness Center. Now, her identical twin is
sitting right next to her, and you need to know that both of them are heart failure patients. So they were telling us
their story at lunch today. They’ve had heart failure for a while now, and fortunately, they’re doing very well with their heart failure. And Shaun contributes time and experience as heart failure ambassador for the American Heart Association. And she contributes her time
to help educate her community on heart failure issues as
well as telling her own story of survival, and today
we learned that she’s got a very innovative program
about heart failure and diabetes, and I’m hoping
she’ll be able to share a little bit about that later. Right next to her is her
twin, and her twin is Kimberly Ketter, and Kimberly
is an adult geriatric nurse practitioner, and also a certified diabetes educator at the Case
Management Solutions, LLC, and again, she also has heart failure, was diagnosed with heart
failure after her sister. They both live in Petersburg, Virginia, and her focus is also on
managing and educating adults with type 2 diabetes and
other cardiometabolic issues including obesity and hypertension. The person to, I guess
coming down toward me, their right, it would be Aimee Rodriguez, and Aimee is a heart failure ambassador. So we learned a little
bit about her story today. She’s a mother of three
from Woodbridge, Virginia. She survived cancer,
and then was diagnosed with cardiomyopathy and heart failure. Aimee was also determined not to let her heart failure diagnosis stop her from pursuing her passion: motorcycle riding. So last spring she organized a charity to ride in her hometown
to Woodbridge, Virginia, to raise awareness about heart failure in conjunction with the
American Heart Association. So she’s bringing good things to life. Next to her is Allison Roberts. Allison is a nurse practitioner, and she’s a practicing practitioner, and she helps support one
of the three pilot centers that you heard about earlier
at Medical City, Plano. And then next to her is Greg Duck. He is a physician’s assistant, and also he supports another
one of the three pilot centers. He’s at JPS Health Network. And then you’ve already met Dr. Kahn. So I think one of the questions
that we may all want to know are what components of
the program have been the most difficult to implement? – I can kinda speak to that a little bit. So I think in the
impoverished populations, typically where I work in Tarrant County, there’s not a lot of access
to buying a data plan, and so things like having a tablet aren’t really very practical. That’s something that the
organization is working on, and finding alternatives to provide those. They’ve kind of taken
measures to create packets where people can track their daily weights instead of entering them into a tablet. So that’s been a good movement so far. – So Aimee, you’re one of our patients. Why don’t you tell us
from your perspective. So we’ve heard the provider perspective; from your perspective what do you think is the most important
thing that has helped you to manage your journey with heart failure? – For me, I believe the information. One of the things when I
initially was diagnosed, I was actually just kind
of handed a red folder, and was explained I have heart failure. For me, one, as a patient,
that’s information overload. You have a thousand things
going through your mind, so me reading what was in
the folder, I’ll be honest, was not at the top of
my list at that moment. For all the information that’s out there, one of the things that I like is this, because it lets me, it allows me, rather, to check and see what
are some of the things that I should be looking for, and one of the things that I wish is I wish I woulda knew about this sooner prior to being diagnosed
because of the fact that I woulda knew what to look for, because for me, I didn’t feel sick. The only thing I was was
I was just really tired. – Shaun or Kim, if you guys can maybe help us understand, are there things that in your interactions with your providers, that they’ve done well,
or things that you wish that they’d done better
during your journey? – For me it’s a little
difficult because I’m provider and patient, and nurses
historically are horrible patients. – Bad patients! – We just are. We can heal the entire world, but when we have to look in that mirror, we’re like, nah, I got this, and we do everything but
what they’re asking us to do. So for me, though, even at diagnosis, when I was told that I had cardiomyopathy, and as a provider, I still
wasn’t trying to hear that. What I wish they would have done was to not speak to me as
though I was a provider. They gave me all the verbiage. In that moment I was a patient. You know what I mean? So after he told me I had cardiomyopathy, I heard nothing else he
had to say after that. It scared me to death. I cried like a baby. I wasn’t a nurse
practitioner in that moment; I was a patient. So that’s just one of the things, if I had to mention
that to other providers, is that no matter what your patient is, just give it to them straight, but with compassion
and empathy, of course, but don’t just assume that we know things because even though we
do, we’re not hearing it. I just didn’t hear it at diagnosis. So still just giving it to me
straight was really helpful. – I think that’s probably
one of the hardest parts of my day is telling somebody
that they have heart failure. I think maybe Shaun, if you can comment, what are the things that
would be helpful to hear as you’re hearing that message? – Well, my sister, she
was diagnosed first, so it’s almost like I
sorta knew it was coming, but I didn’t wanna know it was coming, because I was diagnosed maybe
three weeks after she was. But even in that moment, like she said, you hear it but you didn’t hear it. So it was almost sorta
the same type of thing, and you hear it all, but in that moment, my first thought was, “I don’t wanna die.” You work with congestive
heart failure patients, and you see that image in your head, and I didn’t meet any
of that criteria at all. We didn’t have high blood pressure, we didn’t have diabetes,
we weren’t overweight, we were pretty active, but we
didn’t meet that textbook look of heart failure. So in that moment, they
told us, “Miss Rivers, “you have heart failure,”
and it was sort of just that. They said, “Oh, we’re
gonna start you on meds, “and come back and see me in
three months,” and kinda left. And I’m sitting there like,
what just happened to my life? So just in that moment,
just take a few more minutes just to add that little extra
when you drop that bomb. – When you’re working with patients, what is it they tell you
what they want more of? What most often come to
mind that they need that, we talked about the five
unmet needs that rise above heart failure as targeting,
but in real life, what do patients want more of? – I think on a human level,
we just wanna trust somebody. And that’s something that
I feel like this program has really brought out, front and center. If I don’t have a
relationship with the patient and they don’t trust me, I’m just some guy sitting in a room telling
them a bunch of things that they probably may or may not believe. I think it’s been helpful
being able to capture somebody in the hospital. You meet them for the first
time, tell them these things that they need to hear, but let
them know that there’s hope, and that this is something
you can live with. And then you can give
them tools to help them with this thing that is
now a part of who they are. – What I emphasize to
folk that I talk about, there’s a lot to be said
about cultural sensitivity. A lot of the folk just want
you to know that you care, and you hear them from
a place that you get it. So it’s not, someone
mentioned that earlier, it’s not just being sympathetic,
it’s being empathetic. – So when we talk about heart failure, we talk a lot about having
patients be in control of their health as one way
for them to feel better, have better quality of life. So speak to me a little bit. The providers can talk a little bit about how the pilot program has helped to increase patient control, and some of the other providers
may want to talk about what they do in their own practices to help increase control. – Well, I think from initially
when you’re diagnosed with heart failure, your life changes. The way you eat, the
things you’re gonna do in your daily activities change, and to expect patients to go from A to Z in that three, five, seven
days they’re in the hospital is really hard. So giving them somewhat
control with the HF Path app gives them access to
understand those things, to process those things, to
change their dietary habits, slowly understanding how
they need to be more active, looking into their medications, being compliant with their medications. It gives them a tool to
track their weight daily. All those thing, they’re
relatively simple things, but if you put all those things together, they’re extremely important, and that’s what we really
need to look at, I think. – I think that was probably
one of the hardest things for me, and I’m a nurse,
and I know better. But the diet piece was really hard. If you’re a nurse, or you
work in the health care field, you know you eat on the go all the time, and I was sharing with you, I
was the queen of the Slim Jim. (participants chuckling) And it had to be the one
with the cheese on the side. But diagnosed with heart failure,
the salt is off the chart. So there are a lot of things that you have to change in your diet. So I share that story with my patients that you’re not alone, and that
health care lifestyle change is difficult, but it can be done. – One of the other things that we share, and we tell our patients all the time, is that we tell our patients that they are the CEO of their health care. They’re in the center of it all. – That’s wonderful. I think one of the things
I’ve heard a lot about is how this term heart failure
you guys are mentioning, cardiomyopathy and heart failure, but that term itself and the
connotation that it carries. So I think one of the things
from the question that I have is how can we better provide
or transition that as well. And one way I think the pilot is doing it is making it rising above heart failure. So overcoming this, and providing resources for overcoming it. What are other things that you guys think may be helpful in how it’s explained, or this terminology that
carries a lot of weight? – It’s not a death sentence, and folk will look at
Shaun and I all the time, and we just go, go, go, go, go. There’s too much work to
do to lay down and die. I’ll have plenty of time to do that later. But they look at us and say, “No, you can’t have heart failure.” We say, “Exactly.” I don’t wanna look like
I have heart failure. I don’t wanna look like
that typical person that’s sleeping, and not moving around. I still wanna live a very active life. And it can be done if you do A,B,C, and D, and kinda manage it with
the things and apps, and things that are possible. So we just want to stand and be the light in that dark place. The word heart failure is scary. Even as a nurse, when
I heard it I was like, you gotta be kidding me, heart failure. ‘Cause a lot of people, if you ask them what heart failure means, they say, “Is my heart gonna stop?” And they have this misconception about what heart failure actually is. So the way we explain it is, well, it’s not that your heart stops, it just means that you
have a weakened heart. It’s not pumping the blood
like it’s supposed to. It’s kind of a floppy heart, and we equate it to a rubber band. I tell them if you imagine one of those little small, black rubber
bands, and you pull it, and you let it go, it pops like that. That’s a good heart. But now if you get the big floppy one that you get at the post
office, or something, you gotta pull it way back
here, and if you let it go, you’re still not gonna get that pop. They get that. They need something visual,
a lot of times, to get it. So they’ll say, “Oh, okay. “So I need to be the black rubber band.” I say, “Yes, so that means
you take your medicine “the way you’re supposed to
so we can get it that way.” So it’s just things like that that I think are really helpful. Just put folk in charge, and we always say we have heart failure,
but it doesn’t have us. – All right, so now I have
a question for Dr. Kahn, and for Greg, and for Allison. And that is that when we put
transition programs in place in Cleveland, one of the
big lessons that we learned was that you really have
to have strong leadership. The leader doesn’t have to be
the director of the program, or a physician, or an administrator, but it’s gotta be a
strong leader who is able to really make sure things happen, and who has the authority
to make sure things happen. So I’m curious, you guys are
part of the pilot program, do you have strong leadership,
or do you feel like you’re kind of riding the ride, and it may fall apart at any
time if you go on vacation, even, because there’s no one there to really manage the shop? So it’s just a Cleveland thing, or if you agree that really the leadership is really important. – I think that’s a really good question because I think it’s a problem everywhere. I think in general, as
health care providers, physicians, P.A.’s, nurse practitioners, nurses, everybody, we
could all do a good job about talking to each other better. For example, if an E.R. sees
a heart failure patient, and they don’t know
they have heart failure, and their blood pressure’s low, and maybe they think it’s sepsis, and they haven’t asked
them about heart failure. Well, that’s a problem. They might get bolused
with a bunch of fluids and throw them into
fulminant cardiogenic shock. So I think getting together
with a nuclear team of your clinic, whether
that’s your nurses, your advanced practice
providers, your physicians, and having the conversation
with everybody else in the hospital about this is how we typically manage heart failure. This is how we do it. And then when you have
those conversations enough you start to get some traction,
and things start to change. We’ve noticed that they start
to treat volume overload more differently in the E.R. setting now, and that’s a good thing. – What are some of the challenges
with scaling one program like this and making it a little bit of a one-size-fits-all, and it’ll
come back to some of that sociodemographic as well
in different counties where there are different resources, or different neighborhoods,
how do we also then more specialize it based on the area? – So for us, we developed a,
I call it a virtual huddle. I don’t know if the rest
of my team would call it a virtual huddle, but we have
1,400 beds on the main campus, and heart failure patients
could be anywhere. And then we have 11
hospitals in northeast Ohio. So our heart failure
patients are spread out, and there are some
communities in Cleveland that are extremely poor, and others that are more well-to-do. And so what we’ve done is
we’ve developed this online, or virtual huddle, that’s in our epic, and a patient cannot be
discharged from the hospital until everybody who’s supposed to sign off in the virtual huddle was done so. Does the patient require
a care coordinator or a social worker based on
the risk for rehospitalization? If yes, they have to show what they did, and they have to sign it. It’s not just a check
box that’s anonymous. So we know exactly who did the work. Are the patients on the right
drugs at the right doses? If they’re not, why not? And so we have to list
the contraindications to everybody knows why the
patient’s not on a drug. Is the patient getting cardiac rehab if that’s the next step for them? Are they getting their
seven-day followup appointment? We actually make a seven-day,
and a 30-day followup appointment before they’re
discharged fro the hospital, and then we try to have some
education around it, as well. Many patients go home
and they’re feeling good. We just diuresed 27 pounds off of them, or whatever’s going on. So they’re thinking,
“Why should I go back in “for a seven-day visit? “It’s gonna cost me money.” And so we try to explain to them, no matter what their
socioeconomic status is, this is our way to tweak your condition, to uptitrate drugs if we need to, to change a medication if
we overdid it at discharge. So we really try to spend
time educating patients at their level, in an individualized way. We try really hard to give
everybody a phone call within 48 hours. So again, as long as they have a telephone we can talk to them. And we have learned that many
of our disadvantaged patients do have cell phones. They may not have other things, but they do have cell phones. And so it’s easy enough for us
to get in contact with them. Now sometimes the cell phone number dies, and changes, and we have to
find the right cell phone, but they do have cell phones,
and so we try to talk to them and make sure, did you get
your discharge medications? We were learning that
people would wait a week just to go to the pharmacy and get their prescriptions filled because they felt like
the didn’t need to rush. They’re feeling better. And so again, it’s learning
those little lessons, and finding out where the gaps are, and then trying to fill the gaps. No matter what the context is, that everybody can be a
win-win from that scenario. So the next question is, can
you talk about working with providers beyond the walls
of the hospital or clinic? How do you really address
transitions of care to sustain heart failure management, or beyond that hospital setting, whether it’s assisted living,
or skilled nursing facilities, or other avenues of care, ’cause not everybody goes home and they don’t just come
back in, very simply. I don’t know if any of our providers can help answer those questions? – Yeah, so one thing that
we’re trying to do at our site is to incorporate a mobile
heart failure bus, or a truck. And what we do is we are going to identify high-risk patients who
are going to be readmitted with heart failure, and take
it to them where they live. And it’s not like a new idea. There were several posters last night with the Get to the
Guidelines meeting last night where people are doing this
already: fire departments, people that live in
Wisconsin are doing this, and they’re getting really great results. And their point is that
when you’re in the hospital, when you’re being told all
these different things, like you have heart failure. Like you said earlier, that
was the last thing I heard, and then I kinda checked out, ’cause you’re in this setting
where you’re not in your home, you’re not familiar with
anything and then you get all this information. And so when you go home,
if someone can come to you, and make sure you have what you need, medications, a pill box, tips on how to eat, here’s
your medicine that you take to not get too overloaded. I mean, it makes a huge
difference, and they found that this dramatically reduces
rehospitalizations as well. – All right, I had one more
question that came through, and it’s another simple one, is the virtual huddle through
the electronic health record. And initially, it was on paper for us, and we developed it on
paper, we ran with it for a three-month period, a trial period on just our heart failure floors. We had three heart failure
floors on the main campus, and it was so successful
that we did put it in the EHR, and now it is electronic, so anybody can see it anywhere. And to give you an idea,
our rehospitalization rate dropped from about, this is
in the areas we’re using it on main campus, from
about 20.9% down to 13%, which is huge considering
that we get the sickest of the sick patients. There’s a lot of complexities, not to mention the socioeconomic issues. But just issues of having end-of-life, a lot of medical conditions
on top of the heart failure, patients that are pre-VAD that
may end up coming back in. So that includes all heart
failure hospitalizations. All right, we’ve come to
the end of our hour here, so I first and foremost
want to thank our panel for being so open and willing
to share your stories, and a little bit about what works for you, and how you make heart failure work from a day-to-day scenario. So thank you Allison, Greg,
Aimee, Shaun, and Kimberly. And also Dr. Kahn for being
co-facilitator with me today. Thank you again. (audience applauding) – I think the Rise Above
Heart Failure pilot is gonna provide us very
important information, and as we heard today
from some of the providers that are participating, is
that there are certain aspects that are very helpful: the education material, the resources. And there are certain
aspects that are difficult: having a tablet, or
having access to a tablet, is not always possible for all patients. So being able to understand and tease out some of these nuances
during the pilot stage, and be able to understand what we need to then scale this nationwide. We talked today about how
different healthcare systems are trying to introduce care
coordination in different ways. What are the resources
needed for each community, which may be different, and
really being able to understand what are the drivers for
readmission, and address those. – We need to make sure that
the leader who is supposedly in charge of whatever
programs are in place, is really leading. They’re not leaving it
to somebody else to lead. Yes, other people can take the
program and move it forward, but are we seeing the results every month? Do we get quality improvement data? Do we discuss that quality
improvement data with our teams? And do we recognize that
the team is only as good as the lowest performer? It’s like a lawyer’s office. You’re only as good as the partner who’s performing the least. And so we need to look at it in a way that helps us all rise up and do better. The second factor is quality
improvement initiatives. Hospitals that have formal
quality improvement initiatives, with a leader, but more
importantly everybody on the team knows what it is they oughta be doing, where their goals are, and how they’re gonna get to the goals. Those programs will do
better than hospitals that really don’t pay attention to quality improvement at all. And then the third thing I would say, it’s a pretty global one,
but it encompasses a lot of arenas, and that is
communication and collaboration. It takes a village to
manage heart failure, and so who are the teams
that you’ve put in place, do those teams communicate
with each other, and how do they communicate
with each other? I mentioned that we have a virtual huddle at the Cleveland Clinic. That’s one way of communication, but in a small facility it
may be in-person communication every day at 4:00 p.m., and
going over all of the cases. Or it may be at the bedside
with physicians, patients, so the patient and family are right there hearing the message as
the team is discussing. And that also lends itself
to shared decision-making and getting the patient
involved in their care. So when it comes to heart failure, oftentimes patients know what to do in terms of taking care of themselves, they simply do not know how to do it. We, as providers, need to
teach them how to do it so that they can do a better
job of activity, diet, fluid management, all the different pieces we want them to take care of on their own. (optimistic music)

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