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How Can CLL Patients Mitigate Distance and Technology Barriers to Care?

How Can CLL Patients Mitigate Distance and Technology Barriers to Care? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients overcome barriers to their CLL care like distance, technology, and other challenges? Dr. Kathy Kim from UC Davis School of Medicine details the challenges she’s witnessed for patients and some ways that both patients and providers can help bridge the gaps to optimal patient care.

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Transcript:

Dr. Awan:

So is it going to be financially difficult to let’s say, get an app or download an app, which might have a subscription service, attached to it, so that’s the first question that I might have. And the second question is then, this is something that I run into every day. A lot of my patients are older. Some of my patients live on farms, a couple of hours, three, four hours away from Dallas in a relatively rural area, east or west of us in north Texas, and you know those people may not necessarily have access to broadband, they may not have access to high-speed internet. So, they may not be able to get online, or if they do get online, the connections are not the most perfect, so it’s always, the video is not pretty good, or they frankly, may not know how to operate, they don’t just don’t feel comfortable operating these devices or the tablets or phones, even though they might use them for making calls and texting, but they may not necessarily be very conversing with them or very at ease with them, so are those options really difficult for our patients to use?

Dr. Kim:

Yeah, so you’ve mentioned three really key areas, cost, connectivity, and what I will call digital literacy or digital familiarity, those are really three key areas that we need to address for anyone who wants to use these tools to be able to use them. So, cost is the first thing, most mobile apps are fairly inexpensive, and if you’ve downloaded anything from the Apple Store or the Google Play store, almost everything is free, or a few things might have you know $2.99, $8.99. Some of them do have subscription fees. So, the app itself is probably the least expensive part of it. The more expensive part is, do you have a modern smartphone that can actually, where you can download that up or do you have a modern tablet or a newer laptop that can actually use apps, right? Not just software, but apps, those devices is where the cost really comes in, and you know if you’ve got any kind of device, it’s every couple of years, you have to replace it or upgrade it to kind of keep it up-to-date. So that is definitely a barrier of the cost of the computing device or remote patient monitoring device, and that is where we really need to collaborate in the industry with our hospital systems and our provider systems, with our legislative representatives, with our insurance companies, to provide low-cost access to the devices.

The third thing is connectivity, which is both cost, and it is a cost as well as an accessibility issue, and for most of the uses in healthcare, as you’ve mentioned, we need to be able to do video, we need to be able to connect to the devices for data, and that means we either have to have a cell phone data , a mobile data plan that can run data on your phone or your tablet, or you need a broadband connection in your home, an actual Wi-Fi plan that comes installed. You need one or the other. And again, either of those options are quite expensive, if you do video visits, it can really eat up your bandwidth if you’re on a low band, low bandwidth plan or you’re paying for the minute or by the bit. It can become very expensive, so we have to have a cost-effective plan available to people, and again, there’s lots of policies or proposals, to be submitted both at the state level, and there are federal programs that are actually now subsidizing. So specifically, under COVID, provider organizations can apply to the federal government for special funds to offer telehealth help to patients, so many providers have bought tablets or other remote patient monitoring devices or things like that, that they can give out to patients.

Which brings us to the third thing that you mentioned, which is digital familiarity or digital literacy. We have to help people learn how to use these. So even if you use a cell phone, it’s different using a smartphone, right? The apps are different, the navigation is different, how you touch your screen is different, how these applications actually work, and how to get the data from your own device to a provider, to your doctor is a whole another set of skills, right? Do you have to pair these devices, do you have to register an account and have a password? Do you have to approve your doctor to get access, there’s all these questions about how you would actually do all this and this is where organizations like Patient Empowerment Network, that I know does a lot of effort to help patients more how to use technology, as well as the research that we have been doing at UC Davis in the community about how to support patients overcome all these barriers becomes really critical, we have to actually work together to make sure all three of these issues are addressed so that everybody can have access.

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Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Improve My Quality of Life with CLL? from Patient Empowerment Network on Vimeo.

How do chronic lymphocytic leukemia (CLL) patients and care partners feel about the impact of telemedicine on quality of life? Watch as a CLL patient and care partner, Bob and Susan, discuss how easier access to blood test results affects patient emotions before and during remote office visits.

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Transcript:

Susan Bottega: 

The role of telemed in terms of survivorship I think is a very, very interesting subject. CLL patients are living a very long life these days with the onset of the novel agents that are coming out. Quality of life becomes a very, very important subject for CLL patients. So much of their quality of life is diminished by the visits that they have to make into doctors’ offices.

The anguish that they spend the day before, the sleepless night that accompanies the doctor’s visit. I think that this is extremely important. You’re looking very possibly of at least two days taken out of your life, and if you’re making these visits on a monthly basis or bi-monthly basis or even tri-monthly basis, that’s a long period of time to take out of the span of your lifetime. And as we’re living longer, this becomes more and more important.

You want to have that quality of life, you want to be able to go on vacations. Your vacations can’t be postponed because you have a doctor’s appointment looming in the future. You can take your computer right along on vacation with you and share your vacation with your doctor.

Bob Bottega:

I like that.

Susan Bottega:

I think the anguish that you feel about blood tests is diminished by it. You don’t have to wait to get the results of your blood tests, your blood tests pop right up on your patient portal. You don’t have to sit there and wait in a doctor’s office until you see those results.

Once you see your doctor, you’ve already got your results and you’re calm about it, you’re relaxed because you know what the results are and you can discuss them without having to deal with the anxiety that comes with hearing, “Okay, my white blood cell count has gone up considerably, so how do I calm myself down to discuss this intelligently at this point in time when I’m emotionally so upset over it?” I think these are very, very important things about the quality of your life. How about you, Bob?

Bob Bottega:

I think you said it all.

Susan Bottega:

Don’t I always? (laughter)

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Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Give More CLL Patients Access to Clinical Trials? from Patient Empowerment Network on Vimeo.

Though some with chronic lymphocytic leukemia (CLL) may have limited access to clinical trials at expert centers, telemedicine may change access for some patients. Watch as Dr. John Pagel shares how telemedicine might improve CLL clinical trial options. 

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Transcript:

Stephanie Chuang: 

There is a lot of attention being paid to clinical trials and progress, and so how might telemedicine impact clinical trials when it comes to CLL therapy?

Dr. John Pagel: 

Well, I want to first tell the audience that clinical trials are critically important for many patients who have CLL. Clinical trials are really an opportunity to get something that’s better than the standard of care most often, or at least just as good and has the promise again, to be better. We have advanced major new paradigm changing therapies over the last many years through clinical trials, and now we’re looking at really exciting things like bispecific antibodies, newer generations of these targeted therapies that are better tolerated and perhaps even more active in resistant patients. And even as we talked about CAR T-cell therapies, those are all only available through clinical trials, and then that’ll continue to evolve and go on as well.
 
I would encourage patients to think about clinical trials, and because of telemedicine, now we’re going to be able to reach to other patients who are further away from an expert, perhaps where clinical trials are only available, and they can be then involved in one of those opportunities. Telemedicine, I hope, and I believe, will be a major advance for getting the cutting-edge, best therapies for patients who might be very far away from a very important expert center. 

Will Telemedicine Activate More Remote Tools to Manage CLL?

Will Telemedicine Activate More Remote Tools to Manage CLL? from Patient Empowerment Network on Vimeo.

As telemedicine has grown in the management of chronic lymphocytic leukemia (CLL) care, will its use bring other remote tools into patient care? Watch as CLL expert Dr. John Pagel explains.

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Transcript:

Stephanie Chuang: 

Dr. Pagel, there are tools out there like video otoscopes, electronic stethoscopes, thermoscopes, retinal imaging systems, will CLL patients be able to have access to those tools for themselves one day, and on that note, what are the tools you believe will impact the future of CLL care?

Dr. John Pagel: 

Yeah, in fact, that’s really where we’re going. We do stuff like that already through the hospital. As you may know, as an example, if someone comes in with a cardiac condition, they need to be monitored remotely, they can’t stay in the hospital indefinitely we need to kind of know what’s happening, perhaps as an example with their heart rhythm. So they actually have tools where they can wear a little monitor even on their wrist that communicates with the doctor. So the doctor can see even in real time what’s happening with that individual patient. 

These types of tools are the future, and we’re not going away from them, we’re embracing them. We’re not there yet for routine standard care, especially in CLL but they will be simple things like heart rate, blood pressure measurements that are very simple and easy to do that not only are able to be read by the patient, but actually again, from a remote standpoint, be electronically downloaded and delivered to the physician, real time. That’s going to be important. And actually, I believe that we’ll even add advances for that in the blood work or other approaches in the near future. So just stay tuned we’re just scratching the surface there. 

Stephanie: 

Okay, so you’ve heard it here first from Dr. Pagel, stay tuned on this.  

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