CLL Access and Affordability Archives

The impact of cancer isn’t just physical, it’s also financial. Navigating coverage and out-of-pocket expenses is a minefield for many Chronic Lymphocytic Leukemia (CLL) patients and care partners.

Let us help you make sense of costs, coverage and where to turn to for help.

More resources for CLL Access and Affordability from Patient Empowerment Network.

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.

See More from Best CLL Care No Matter Where You Live

Related Resources:

 

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?


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.

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID? from Patient Empowerment Network on Vimeo.

What are some key questions that chronic lymphocytic leukemia (CLL) patients can ask about digital tools for their CLL care? Dr. Kathy Kim from UC Davis School of Medicine offers advice on questions to ask and explains important use factors about some technologies.

See More from Best CLL Care No Matter Where You Live

Related Resources:

 

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

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


Transcript:

Dr. Kim:

Patients should be advocates and they should ask, what can you give me that can help me through this process, and what tools do you have for me to communicate and stay connected with my doctor? So, you should ask, are there ways for me to get in touch that are not calling, just when the clinic is open, do you have a secure messaging system? Can I message through the patient portal? Do you have an app that’s available for that patient portal that I can download? Do you have any other research studies where they’re trying as the same way you said patients should ask other clinical trials, are there research studies using technology for cancer patients? So as much as outreach as we do to try to recruit patients into our technology trials, oftentimes somehow patients don’t hear about it, so if you ask and you’re interested, is there a study like that where I can get access to technology to try it out, to see if it will help. So, you should definitely be an advocate, but I think some specific tools that patients should be asking about that are already available are things like, how can I get an electronic copy of my care plan? Can I get that through the portal or do you have an app where I can download my actual care plan? How do I get electronic copies of my medical records?

Where can I get them? And how can I store them safely? How can I connect to other patients in my area? Do you have an online patient support group? Do you have any services at the hospital where you connect patients like me as close as possible to the kind of patient I am, that you can make a match for me to talk to someone by using either ZOOM like this or an online support group or just one-on-one match maybe introducing by email. These are all technological tools that already exist that are not, that should not take a huge amount of time for someone to learn a new technology, but you want to make sure that it’s something that your hospital and your provider feel comfortable have tried and know that it’s secure and safe and useful. You don’t wanna go off and do something that your provider has no connection to it, you really wanna keep these as integrated as possible, and in that way, I think in the future, we won’t just rely on Mr. Marks, you have to come in to the hospital for every single thing. We want to give you all these tools, and then you and your doctor can decide which things you really have to come in person for and which things you can access online.

And so that is the conversation that every time you go talk to a new provider or go to a new hospital or clinic, you should ask, what technologies do you have that are available to the patients? And that that’s how I think we’re gonna push forward our new model of cancer care, which I will hope will use the technology to allow patients to collaborate with their healthcare team more easily and more seamlessly and in a way that’s safe and secure

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families? from Patient Empowerment Network on Vimeo.

What are available innovations for chronic lymphocytic leukemia (CLL) patients who speak languages besides English? Dr. Kathy Kim and Dr. Farrukh Awan share their perspectives on interpreter services and multi-language technology innovations for patients who need Spanish, Vietnamese, Korean, Chinese, and other languages for improving their CLL knowledge and care.

See More from Best CLL Care No Matter Where You Live

Related Resources:

 

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

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


Transcript:

Dr. Awan:

Another issue that we have seen is that some of our patients and we live in a town that has a substantial percentage of Hispanic-speaking or Spanish-speaking people, so we actually have access to a lot of resources and a lot of options for those patients, but there might be some limitations in people who don’t necessarily speak English as the first language, so what kind of tools do we have for those people, what kind of resources can they access to? So, Dr. Kim, anything for those patients?

Dr. Kim:

Yes, and we have really made an effort in our own research to any of the resources that we provide, the mobile applications that we use are available in multiple languages, and I will say Spanish is the most common one that we are able to support. Of course, there are many, many languages spoken in the United States, beyond English and Spanish that we do, we are challenged when we try to find other resources or applications that can be in Chinese and Korean and in other languages. It’s really challenging. So, in our own work, we have developed applications, and this is in research, so these are not things that are necessarily available in practice. We have developed applications for example, for care coordination for patients undergoing chemotherapy or to support shared decision-making at the beginning of your cancer journey between a patient and their family and a clinician, and when we develop those applications, as I said, we, obviously, I don’t speak Spanish, I only speak English, so I’m limited as to what I can develop. I can develop it in English, but then we always try to co-design it with clinicians who speak that language and with patients, so we do a lot of co-design with patients so that when we create it we’re making sure that it seems appropriate when it’s produced in other languages, and then we always test it with people who are native speakers in that language as well, so that’s one.

So many of the educational resources, our website information, our mobile applications, there is no reason why we can’t have those available in multiple languages. I think it is more challenging when you’re trying to build a relationship with a provider, with your doctor or with your nurse, or nurse practitioner and the patient don’t speak the same language, and then we have to rely on interpreter services. And I will say that that has not quite made the leap that we’d hoped with telehealth, to integrate an interpreter into your telehealth visit is quite challenging, and I’ve heard of doctors and patients being on a televisit and then the doctor calls the interpreter on their cell phone and tries to put that speaker up to the speaker on the computer, and that it’s not the best experience for anybody. So, that is an area that we would really like to work on, how do you have interpreter services really integrated into telehealth so it’s smooth for everybody.

Dr. Awan:

And let me share my experience, just this week, actually, on Monday, I was in clinic and we frequently have patients who speak Spanish, and we have in-person Spanish interpreters that are readily available, so one of my patients was a Spanish speaker, so I had the interpreter in the room with me, so that interaction went really well, the patient’s daughter was also obviously able to interpret some of that, so it was a fairly easy conversation, we explained, we talked about treatment options and what the plan is, so that went really well, My next patient was a Vietnamese speaking patient, so we don’t have those in person, so my nurse got me this iPad, which was on a mount, it’s like a dolly that can go from room to room, and I

turned it on and I was expecting some issues and they basically had a screen for me saying what language do you want, and I said Vietnamese, and then literally 30 seconds I was connected to a Vietnamese speaking interpreter, and they were able to see me, see the patient and the patient was able to see them. So, it was almost like having an interpreter in the room.

I think it always helps to have an interpreter in the room, in the event that you have to explain certain medical terminology, so my experience with this one application that our hospital subscribes to was very, very good.

I also found out that actually there are certain apps that if I want to print out a certain form or a certain patient education material and give it to the patient, okay, fine, this is the treatment you’re getting, these are the side effects, this is what to expect, there are options for translating it because they are already translated. You just hit the language you want, and that prints out the material in that language and you can give it to the patient to read, and I feel that that was a good resource to have. Similarly, being involved in multiple clinical trials, I feel that that is sometimes challenging option for a lot of patients, but I just wanna reassure everyone that all you have to do is ask. You can ask for a form in a specific language and it’s my responsibility, it’s my job to make sure that that translation is available to you so you can read it in your own language, and that is a service that is provided routinely by our cancer center, and I’m sure by a lot of other major academic centers and cancer centers in the country.

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care?

How Can CLL Patients Avoid Pandemic Challenges Without Compromising Quality of Care? from Patient Empowerment Network on Vimeo.

How can chronic lymphocytic leukemia (CLL) patients ensure that they receive quality care even during high-risk times like pandemics? Dr. Kathy Kim from UC Davis School of Medicine shares her recommendations for providers and information about remote monitoring devices for improved patient care.

See More from Best CLL Care No Matter Where You Live

Related Resources:

 

What Multi-Language Technology Innovations Are Available for Cancer Patients and Families?

What Key Questions Should CLL Patients Ask About Digital Tools Born Out of COVID?

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


Transcript:

Dr. Awan:

You know, with so many patients nowadays who are worried about their cancer care and how that will continue, and especially now with remote monitoring. How, what kind of tools do you have deployed and used, what would be your recommendations for us and how we can make us some of these new innovations and new methods to provide the best care for our patients?

Dr. Kim:

I think even when you’re thinking about using technology, again, it’s not one-size-fits all, it is what the provider is comfortable with and what the patient is comfortable with, and what you two can work together to improve your care. So, I think there are a lot of innovations that have been developed over many years, but this past year under COVID, we saw an acceleration of people adopting them because it was out of necessity that people didn’t come in to a setting where they might potentially be infected or to infect others. So, we certainly saw a huge increase in telehealth, which has been virtual visits, like we’re doing right now, we are virtually visiting with each other or telephone visits, so there’s been a huge upsurge in the number of hospitals and clinics and practices that have been able to implement telehealth with their patients. But there are other tools that again, have been in development that are now starting to take off under the last year, and those are remote patient monitoring devices, these are either specific medical devices, like blood pressure machines, glucose meters, some heart monitors, sleep monitors, you know things that, devices that check your oxygen saturation. So, there are many medical devices that are for use in the home, that are either covered by insurance or people can buy them at the drug store, and what has really come about this year is the ability to connect the data from the device you have in your home to your provider, so that’s been in place, but we really haven’t implemented it very many places, and now lots of places are allowing that connection to happen. So, the patient can use the device in their home and get it connected to the and have it sent to the hospital or to their doctor, so their doctor can be watching the data and also monitoring them, so that’s one really wonderful piece of progress that we’ve had in the past year. I would say the third area that again, has been around for a while but people haven’t used it so much has been mobile applications.

So, these are basically software that you can run on your smartphone or you can run it on a tablet or a computer that let you track your own information. So, I know CLL patients and many cancer patients have lots of documents from all the treatments, from all the visits that they have had, and it’s a challenge to manage all those medical records because you might go to multiple places, right? You’re not always going to the same place. So, now there are many applications that are integrated with the record systems that your hospital or doctor has, where you can aggregate all of your records in one place, and that way when you go to talk to another provider or have this second opinion or a consult, you have access to all your records that you can share. And then you can also track things that are important to you, so maybe you want to track how I feel, what my symptoms are under certain kinds of medications or when I do more physical activity, do I get more tired or do I actually feel better, you know track and by taking my other medications, and for many of us, just remembering to take your medications every day is hard enough if you have several medications and they’re at different times, you might not remember, did I take that one already or do I still need to take it? And so, these applications can also set up your medication schedule and help you to track whether you’ve taken them or not, so there are lots of these tools now available where you can start to manage all of these things and share that information with your doctor.

You know, with so many patients nowadays who are worried about their cancer care and how that will continue, and especially now with remote monitoring. How, what kind of tools do you have deployed and used, what would be your recommendations for us and how we can make us some of these new innovations and new methods to provide the best care for our patients?

I think even when you’re thinking about using technology, again, it’s not one-size-fits all, it is what the provider is comfortable with and what the patient is comfortable with, and what you two can work together to improve your care. So, I think there are a lot of innovations that have been developed over many years, but this past year under COVID, we saw an acceleration of people adopting them because it was out of necessity that people didn’t come in to a setting where they might potentially be infected or to infect others. So, we certainly saw a huge increase in telehealth, which has been virtual visits, like we’re doing right now, we are virtually visiting with each other or telephone visits, so there’s been a huge upsurge in the number of hospitals and clinics and practices that have been able to implement telehealth with their patients. But there are other tools that again, have been in development that are now starting to take off under the last year, and those are remote patient monitoring devices, these are either specific medical devices, like blood pressure machines, glucose meters, some heart monitors, sleep monitors, you know things that, devices that check your oxygen saturation. So, there are many medical devices that are for use in the home, that are either covered by insurance or people can buy them at the drug store, and what has really come about this year is the ability to connect the data from the device you have in your home to your provider, so that’s been in place, but we really haven’t implemented it very many places, and now lots of places are allowing that connection to happen. So, the patient can use the device in their home and get it connected to the and have it sent to the hospital or to their doctor, so their doctor can be watching the data and also monitoring them, so that’s one really wonderful piece of progress that we’ve had in the past year. I would say the third area that again, has been around for a while but people haven’t used it so much has been mobile applications.

So, these are basically software that you can run on your smartphone or you can run it on a tablet or a computer that let you track your own information. So, I know CLL patients and many cancer patients have lots of documents from all the treatments, from all the visits that they have had, and it’s a challenge to manage all those medical records because you might go to multiple places, right? You’re not always going to the same place. So, now there are many applications that are integrated with the record systems that your hospital or doctor has, where you can aggregate all of your records in one place, and that way when you go to talk to another provider or have this second opinion or a consult, you have access to all your records that you can share. And then you can also track things that are important to you, so maybe you want to track how I feel, what my symptoms are under certain kinds of medications or when I do more physical activity, do I get more tired or do I actually feel better, you know track and by taking my other medications, and for many of us, just remembering to take your medications every day is hard enough if you have several medications and they’re at different times, you might not remember, did I take that one already or do I still need to take it? And so, these applications can also set up your medication schedule and help you to track whether you’ve taken them or not, so there are lots of these tools now available where you can start to manage all of these things and share that information with your doctor.

Increasing Treatment Access for Every CLL Patient No Matter Location

Increasing Treatment Access for Every CLL Patient No Matter Location from Patient Empowerment Network on Vimeo.

How can CLL patients get the best treatment no matter where they live? In the era of COVID-19, where social distancing helps to avoid risk for acquiring infections, how can patients, care teams and health systems provide quality cancer care during the pandemic and beyond?

Watch as a panel of experts and a CLL patient discuss innovations around practical tools such as mobile applications that allow you to track your own information to help improve access to treatments. Learn about tips for self-advocacy, the importance of connecting with a CLL specialist and empowerment for increasing your digital literacy.

Related Resources:

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

What CLL Symptoms Can Be Monitored via Telemedicine?


Transcript:

Dr. Farrukh Awan:

Hello and welcome. I’m Farrukh Awan from UT Southwestern in Dallas, Texas. I am a CLL doctor, I take care of patients with CLL. I also perform a lot of research around patients with blood cancers, leukemias and lymphomas, and with one goal to make small advances in the field and hopefully eventually cure this cancer. So, I’m very excited to be on today with all of you and look forward to having a nice discussion with all of you. I would like to start off by introducing the participants of this discussion with me, and I really thank them for their time this afternoon, and hopefully you guys can all enjoy them.

So, I’ll start off with Dr. Kathy Kim. Dr. Kathy Kim is an associate professor at UC Davis in California. She is a very well-established researcher there and the faculty member there, and she’s also the director of the Health Innovation Research Center in the UC Davis Center for Health and Technology. Welcome Dr. Kim. And I also am very happy and excited to be introducing Mr. William Marks, who’s a renowned Jazz musician, who happens to be one of our patients, and we’re very excited that he is joining us today from Dallas. So, thank you all for being here today, and we really want you guys to participate, send in your questions in the chat box or whatever you feel comfortable with, raise your hands, and we can definitely try to get to as many of them as possible.

So today, what we will talk about is how CLL patients can get the best possible care regardless of where they live, where they are, or regardless of the pandemic, we feel that there is a lot of disparity in the care that our patients can get, and we are all familiar with a lot of data that came out recently and also in the years past, which consistently showed the same trend that people in different parts of the country with access to different resources get different levels of care, which I feel that in 2021 it’s unfortunate because we feel that it shouldn’t matter where you are, the care should be consistent, unfortunately, that’s not the world we live in.

So, there are certain issues and concerns and challenges that we face, and we want to highlight some of those and talk about them during the next hour or so. We also obviously are dealing with a pandemic, which complicates the issue even more, you know for the first time, we’ve had an opportunity to deal with this issue of remote help or telehealth or remote monitoring of patients for an extended period of time.

So we’ve had the chance now, ’cause people used to talk about this all the time, but for the first time, we’ve had really an opportunity to really assess the situation and come up with solutions that work for as many patients as possible, so a lot of new things are happening in the field, and a lot of challenges that we have encountered over the last few months, and we welcome some of them, so we’ll talk about some practical tools, we’ll talk about some innovations, and hopefully we can have a nice conversation around that.

So, before we start formally, just a few housekeeping things, so like I said, 30 minutes in discussion of different topics that we felt might be a benefit to you, and then the rest of the time will be dedicated to your questions. Please remember to keep your questions generally broad, we don’t want to know your specific health information ’cause this would be shared as a video format, later on we will have a transcribed format of this presentation and this discussion. So, it will also be available on the website, so please don’t share anything that you would not want to share in a public forum.

I will also try to answer as many medical questions as possible without very specific references to your situation because there’s always so many things that we are not aware of, so don’t take this as formal medical advice, please. This is just a suggestion, and I’ll give you the suggestions to the best of our abilities, and the same goes for Mr. Marks and Dr. Kim. So, let’s start off, we’ll start off with the first domain that we kind of selected we felt would be helpful ’cause it’s very relevant to what we are going through right now, and that’s the COVID pandemic.

So COVID has been a major social inconvenience, it’s a very unfortunate situation that we’re all dealing with right now. Unfortunately, in our country, the incidence of new infections has gone down, but we’ve lost a lot of people and it’s happening all over the world. The third wave that people keep talking about or the second wave is happening as we speak in multiple parts of the world, and a lot of people are still dying unfortunately and still suffering from this, so we do see some light at the end of the tunnel hopefully, with more vaccinations, things will improve.

So, I think the problem that we have encountered during this era over the last year and a half or so, and possibly for the foreseeable future, is how can patients in this challenging time get the best care? How can healthcare teams and can physicians, nurses, APPS, nurse practitioners, physician assistants, how can they work as a team to provide the best possible care to our patients without compromising quality?

So, we will start off with Mr. Marks, and let’s see what his journey has been like, ’cause we kind of know that he started before on his journey before the pandemic and during the pandemic. So, I guess, why don’t we start off with you, William, and see how you want to capture your journey, what happened with you, how you felt about the changing dynamics of a patient-physician relationship, so let’s start off with you and then see what you feel has happened and impacted you during this pandemic?

Mr. William Marks:

Well, my journey started around 2015, real quick, briefly, I was healthy, I went to my doctor every year, got a physical. At this physical, my doctor called me back and told me I needed to come back and get other further blood work and long story short it started my CLL journey. I had a physician, my physician referred me to an oncologist, and I already made up my mind how I wanted my treatment to go, and they wanted to start a treatment on me that I just was not really ready to agree to.

And so, I had a friend that was a physician, and he referred me to Dr. Froehlich at UT Southwestern and he immediately agreed with me and thought, we should wait on treatment for a while because I had no signs of CLL at that time, and then Dr. Awan came about, and what I loved about Dr. Awan is, I did tell him how I felt about what my treatment should be, what I really didn’t want to get into, but he told me that he really didn’t want the treatment, wanted me to take treatment that I thought he was going to tell me I needed. He thought that we needed to wait a while, and so we waited until around I think Dr. Awan, 2017 or 2018, then he started experimental treatment on me and it really works for me, and he can explain to how it has been successful for me. But you have to trust the doctor.

And also, during the pandemic, I had such a trust in my doctor that talking to him via ZOOM on some of my patient visits was no problem for me, and so that’s kind of my journey. I had an oncologist, they wanted to do a treatment on me that I really didn’t agree with, and I found a doctor who first started out saying, “We don’t want to do this right now, we just want to kind of see what happens” and then to me, it turned out successful.

Dr. Farrukh Awan:

So, what I’m hearing you say is that you would recommend that anyone with CLL should at least try to get a second opinion from a person who specializes in the field, is that accurate?

Mr. William Marks:

Very accurate, very accurate. And whatever your belief system was, you know there are certain treatments out there that I just didn’t believe that I wanted to go through at first, and it’s a choice, and I don’t know Dr. Awan, if you really wanted me to delve into that or not, and you know but he told me before I even said that, and it just made me feel like he’s the doctor for me, he feels the same way I do, and I haven’t even told me the idea, so it’s very important that on this journey that you pick a physician that you can 100% trust.

Dr. Farrukh Awan:

So, I think just a little bit of a background, he mentioned that he’s on an experimental therapy, and just to clarify that a little bit more, Mr. Marks got on a clinical trial with a new combination of immune therapy, which worked out very nicely for him. So that’s another pitch for asking about the clinical trial as a patient. I think patients need to be their own advocates; they need to ask for those. Push the doctor a little bit.

Had he not pushed the first doctor, he probably would have ended up with chemotherapy. Now, some people can argue that that may not be necessarily the wrong thing to do, but we have other options which might be even better, or other options which are definitely less toxic, so pushing us, if he pushes me and if my patients pushed me, it pushes me to find the next best thing, so I think it’s a mutual thing, I benefit from patients like him, and hopefully our patients benefit from the doctor being engaged and receptive to their needs.

Dr. Farrukh Awan:

So, I completely agree with this. I think we’ve seen this over and over again, that sometimes if you’re getting a certain plan made already, and if you have any doubts, any questions, and if you feel that you read somewhere about some other thing, you should at the very least, ask the question and you should always make an effort to find a CLL specialist who might be close to you, and if there isn’t a CLL specialist close to you, it’s always an option right now to ask for telehealth with a doctor who might be a couple of hours away or in another state.

Because we now have access to those resources.

So, this is the nice segue, so we’ll get Dr. Kim in next. You know, with so many patients nowadays who are worried about their cancer care and how that will continue, and especially now with remote monitoring. How, what kind of tools do you have deployed and used, what would be your recommendations for us and how we can make us some of these new innovations and new methods to provide the best care for our patients?

Dr. Kathy Kim:

Oh, thank you so much, and I’m glad to hear where this conversation started with you, Dr. Awan and Mr. Marks, because I think even when you’re thinking about using technology, again, it’s not one-size-fits all, it is what the provider is comfortable with and what the patient is comfortable with, and what you two can work together to improve your care. So, I think there are a lot of innovations that have been developed over many years, but this past year under COVID, we saw an acceleration of people adopting them because it was out of necessity that people didn’t come in to a setting where they might potentially be infected or to infect others.

So, we certainly saw a huge increase in telehealth, which has been virtual visits, like we’re doing right now, we are virtually visiting with each other or telephone visits, so there’s been a huge upsurge in the number of hospitals and clinics and practices that have been able to implement telehealth with their patients. But there are other tools that again, have been in development that are now starting to take off under the last year, and those are remote patient monitoring devices, these are either specific medical devices, like blood pressure machines, glucose meters, some heart monitors, sleep monitors, you know things that, devices that check your oxygen saturation.

So, there are many medical devices that are for use in the home, that are either covered by insurance or people can buy them at the drug store, and what has really come about this year is the ability to connect the data from the device you have in your home to your provider, so that’s been in place, but we really haven’t implemented it very many places, and now lots of places are allowing that connection to happen. So, the patient can use the device in their home and get it connected to the internet and have it sent to the hospital or to their doctor, so their doctor can be watching the data and also monitoring them, so that’s one really wonderful piece of progress that we’ve had in the past year. I would say the third area that again, has been around for a while but people haven’t used it so much has been mobile applications.

Dr. Kathy Kim:

So, these are basically software that you can run on your smartphone or you can run it on a tablet or a computer that let you track your own information. So, I know CLL patients and many cancer patients have lots of documents from all the treatments, from all the visits that they have had, and it’s a challenge to manage all those medical records because you might go to multiple places, right? You’re not always going to the same place.

So, now there are many applications that are integrated with the record systems that your hospital or doctor has, where you can aggregate all of your records in one place, and that way when you go to talk to another provider or have this second opinion or a consult, you have access to all your records that you can share. And then you can also track things that are important to you, so maybe you want to track how I feel, what my symptoms are under certain kinds of medications or when I do more physical activity, do I get more tired or do I actually feel better, you know track and by taking my other medications, and for many of us, just remembering to take your medications every day is hard enough if you have several medications and they’re at different times, you might not remember, did I take that one already or do I still need to take it?

And so, these applications can also set up your medication schedule and help you to track whether you’ve taken them or not, so there are lots of these tools now available where you can start to manage all of these things and share that information with your doctor.

Dr. Farrukh Awan:

I really like how you went through all of them, couple of things that I have noticed, and maybe you can comment on this too, one is, what’s the financial cost to having access to those tools? So that’s the first thing. 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. Kathy 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 plan, 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, those, 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 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 the 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.

Dr. Farrukh Awan:

So, you know, excellent points. And thank you for sharing with us. I think that what I would like to stress is, patients need to be advocates for themselves, and if you are having issues or difficulty in connecting with your provider via these remote tools that we have, like Dr. Kim mentioned, we have access to resources that can be provided to our patients in any major cancer center, any major university setting, and a lot of larger practices have access to these resources that can provide these facilities for our patients, so that it makes it maybe less burdensome, more accessible and people can avail those resources and get benefit from them. So, let’s go to Mr. Marks, so what about your journey?

‘Cause you started off by being able to see the doctor in person, you know somebody who can feel you on lymph nodes, you can feel your spleen and see how big they are, and then to go from that to being on video, obviously, I’m assuming that prior to the pandemic, you did not have a lot of interaction with this video platforms for medicine encounters. So how was your journey? Did you have a hard time in dealing with that or getting used to it? How did you open it?

Mr. William Marks:

I really didn’t have a hard time with it. Under the circumstances due to COVID, I understood that we have to go this route, but I would go to a facility to get my blood work done, you would read my blood work and over video you would tell me how my blood work was going, and it just gave me a sense of comfort and ease. It’s already stressful to go through a pandemic for all of us, but to also be dealing with CLL at the same time can be pretty traumatic for some patients, so I’m saying it was pretty comfortable for me because I knew I could go get my blood work done, you could read my blood work, and you could talk to me about what, you could assess it and tell me what I needed to do. So, it was really a comforting thing for me.

Dr. Farrukh Awan:

Awesome, so that’s always great to hear. And I would also like to add that a lot of times in certain situations, my patients are not comfortable with using the platform, they don’t know despite all our best efforts, and in those cases, I encourage them to at least talk to me on the phone, make an appointment, talk to me, so that way you can at least get undivided attention. We can talk about your symptoms, and at the very least, we can say, okay fine, you can go to a lab for blood work close to home, and then we can at least look at the blood work.

I can talk about the symptoms, I can talk about if you feel a new knot or if you feel that you have another new lump or bump, so those are things that I do encourage that at the very least, there are ways to connect via telephone, the old-fashioned way nowadays. And that can also provide some comfort to our patients and they can also benefit from using this old-fashioned tool, so I think this is also, this is great. So, let’s keep going on these and access to care. Another issue that we have seen is that some of our patients and we live in a town that has a substantial percentage of Hispanic-speaking or Spanish-speaking people, so we actually have access to a lot of resources and a lot of options for those patients, but there might be some limitations in people who don’t necessarily speak English as the first language, so what kind of tools do we have for those people, what kind of resources can they access to? So, Dr. Kim, anything for those patients?

Dr. Kathy Kim:

Yes, and we have really made an effort in our own research to any of the resources that we provide, the mobile applications that we use are available in multiple languages, and I will say Spanish is the most common one that we are able to support. Of course, there are many, many languages spoken in the United States, beyond English and Spanish that we do, we are challenged when we try to find other resources or applications that can be in Chinese and Korean and in other languages. It’s really challenging.

So, in our own work, we have developed applications, and this is in research, so these are not things that are necessarily available in practice. We have developed applications for example, for care coordination for patients undergoing chemotherapy or to support shared decision-making at the beginning of your cancer journey between a patient and their family and a clinician, and when we develop those applications, as I said, we, obviously, I don’t speak Spanish, I only speak English, so I’m limited as to what I can develop. I can develop it in English, but then we always try to co-design it with clinicians who speak that language and with patients, so we do a lot of co-design with patients so that when we create it we’re making sure that it seems appropriate when it’s produced in other languages, and then we always test it with people who are native speakers in that language as well, so that’s one.

So many of the educational resources, our website information, our mobile applications, there is no reason why we can’t have those available in multiple languages. I think it is more challenging when you’re trying to build a relationship with a provider, with your doctor or with your nurse, or nurse practitioner and the patient don’t speak the same language, and then we have to rely on interpreter services. And I will say that that has not quite made the leap that we’d hoped with telehealth, to integrate an interpreter into your telehealth visit is quite challenging, and I’ve heard of doctors and patients being on a televisit and then the doctor calls the interpreter on their cell phone and tries to put that speaker up to the speaker on the computer, and that it’s not the best experience for anybody. So, that is an area that we would really like to work on, how do you have interpreter services really integrated into telehealth so it’s smooth for everybody.

Dr. Farrukh Awan:

And let me share my experience, just this week, actually, on Monday, I was in clinic and we frequently have patients who speak Spanish, and we have in-person Spanish interpreters that are readily available, so one of my patients was a Spanish speaker, so I had the interpreter in the room with me, so that interaction went really well, the patient’s daughter was also obviously able to interpret some of that, so it was a fairly easy conversation, we explained, we talked about treatment options and what the plan is, so that went really well, My next patient was a Vietnamese speaking patient, so we don’t have those in person, so my nurse got me this iPad, which was on a mount, it’s like a dolly that can go from room to room, and I turned it on and I was expecting some issues and they basically had a screen for me saying what language do you want, and I said Vietnamese, and then literally 30 seconds I was connected to a Vietnamese speaking interpreter, and they were able to see me, see the patient and the patient was able to see them. So, it was almost like having an interpreter in the room.

And my third patient, this is where it got interesting, ’cause I did not think that I would have that there, ’cause they spoke Macedonian, ’cause they’re from Bosnia and that was interesting, very nice people, but they just don’t speak English, so I got on the same platform and I hit the other button and they said, what language do you want? And I said, Macedonian, and they connected me to a Macedonian speaker, and it was actually pretty straight forward, and I think the patients appreciate it, I think that the family members appreciate it if you talk in their own language. I feel that most of patients in that setting are able to understand some English, but if we try to converse, I feel that sometimes the message that I’m trying to convey may not get through to them like I would like to, and I think that’s why it’s always good to have an interpreter, even if the family member is there in the room? I think it always helps to have an interpreter in the room, in the event that you have to explain certain medical terminology, so my experience with this one application that our hospital subscribes to was very, very good, so I did not have to hold up my phone like Dr. Kim was mentioning. I hate that.

And to communicate to the patients real-time with the person who was actually able to see all of us, so that was my experience recently, and I also found out that actually there are certain apps that if I want to print out a certain form or a certain patient education material and give it to the patient, okay, fine, this is the treatment you’re getting, these are the side effects, this is what to expect, there are options for translating it because they are already translated.

You just hit the language you want, and that prints out the material in that language and you can give it to the patient to read, and I feel that that was a good resource to have. Similarly, being involved in multiple clinical trials, I feel that that is sometimes challenging option for a lot of patients, but I just want to reassure everyone that all you have to do is ask. You can ask for a form in a specific language and it’s my responsibility, it’s my job to make sure that that translation is available to you so you can read it in your own language, and that is a service that is provided routinely by our cancer center, and I’m sure by a lot of other major academic centers and cancer centers in the country.

So, just I’m trying to wrap this up. I think there is a lot of really exciting things happening in the field, and we would like to get to some of these questions in a little bit, but before we do that, I wanted to ask, William, one thing that we run into is, is that as a patient, when you go in and see a doctor, you are likely to be overwhelmed or intimidated by that person in the white coat, and if the doctor comes in and say, Hey, Mr. Marks, you need X, Y, Z chemotherapy, how do you say no to that? How do you get out of that situation in a nice way, so you don’t offend anyone or do you even care? How was … you changed doctors and you sought another opinion, which is a very difficult thing to do for a lot of patients. How did you manage that? Was it your experience in the healthcare field? Or what made you do that?

Mr. William Marks:

Just a feeling that I had. A feeling that I had on the service that I was getting, and I had told my family when I was diagnosed with CLL some of the treatment that I would not take. And when this other doctor just right off the back said, we need to start you with this treatment, I’m like, well, I have no symptoms, I had no swollen lymph nodes at the time, I’m like, I don’t think that’s good for my body to start this off right now, what will my future be? So, I just quit going, I just quit going to that doctor and researched and asked questions and found the doctor that was right for me. So, I would tell anybody, this is your life. And when I was diagnosed will CLL, I made up in my mind that I was going to fight it, it wasn’t a death sentence for me, and I was going to find the best care I could, and that’s what I did and I think it worked out real well for me.

Dr. Farrukh Awan:

Awesome. So, I think that we cannot stress that enough, it has been studied extensively, it has been shown consistently, it has not just been shown for CLL. It has been shown for breast cancer, it has been shown for prostate cancer, so to give you examples very quickly, the prostate surgeon who does a higher volume of surgeries through a robot or robotic prostatectomy is what it’s called, those doctors who do 100 or more surgeries in a year have better outcomes, similarly for breast cancer patients, if they get care under a best breast cancer specialist have better outcome.

Similarly, for CLL, it has been shown over and over again, that if you go to a CLL specialist or somebody who specializes in that field, you not only get tested better, but you also have better survival outcomes, which is very hard to show in a cancer that usually takes a long time to cause problems like prostate cancer or CLL, it’s the same because these are chronic cancers. They can go on for a long time, but even in that setting, if you get taken care of by a CLL doctor, it has clearly been shown that your survival is better as compared to when you’re taking care of a very competent non-CLL doctor.

So, it’s not necessarily anything wrong with the doctor, it’s just that the guy who’s doing this every day, day in and day out and that’s the only thing he does. There are teams of people around us who specialize in this, my nurses see only patients like you, my dermatology sees only patients like you with CLL. My pathologist sees anything, so my whole team is very used to taking care of a patient in that setting, and I feel that even if it’s not me, it’s my whole team that provides the care that is needed for the patient, and I think that’s the whole point.

That’s where the specialist comes in, not saying anything bad about the doctor that sees every cancer, but they just do not have the volume of patients with your disease to be experts in that, because CLL is not a common mission, it is the most common leukemia, but it’s definitely not the most common cancer, it’s not even in the top five. So, you know the most common patients we will see is breast cancer, lung cancer, colon cancer, prostate cancer, so the general oncologist, that’s what you will see, and once every three or four months, they will see a patient with CLL versus in my clinic, I will see 40 patients a week with CLL. So completely different ball game.

This is why patients need to be advocates for themselves, push the doctors a little bit and hopefully get better care. So, that will transition to some of the questions that we have, can Dr. Kim, any insights about non-tech tools, born out of the pandemic that might be a model for future cancer care? That’s interesting, ’cause I feel that we may never get, go back to the pre-COVID era, so people have started calling it BC or AC, before COVID, after COVID. I don’t always like connecting to the popular platforms and would like to explore other easy to use tools. So, Dr. Kim, what do you have to say about that?

Dr. Kathy Kim:

Yeah, there are a number of tools. First, I want to re-emphasize something that both of you have said, which is, patients should be advocates and they should ask, what can you give me that can help me through this process, and what tools do you have for me to communicate and stay connected with my doctor? So, you should ask, are there ways for me to get in touch that are not calling, just when the clinic is open, do you have a secure messaging system? Can I message through the patient portal?

Do you have an app that’s available for that patient portal that I can download? Do you have any other research studies where they’re trying as the same way you said patients should ask other clinical trials, are there research studies using technology for cancer patients? So as much as outreach as we do to try to recruit patients into our technology trials, oftentimes somehow patients don’t hear about it, so if you ask and you’re interested, is there a study like that where I can get access to technology to try it out, to see if it will help.

So, you should definitely be an advocate, but I think some specific tools that patients should be asking about that are already available are things like, how can I get an electronic copy of my care plan? Can I get that through the portal or do you have an app where I can download my actual care plan? How do I get electronic copies of my medical records?

Where can I get them? And how can I store them safely? How can I connect to other patients in my area? Do you have an online patient support group? Do you have any services at the hospital where you connect patients like me as close as possible to the kind of patient I am, that you can make a match for me to talk to someone by using either ZOOM like this or an online support group or just one-on-one match maybe introducing by email.

These are all technological tools that already exist that are not, that should not take a huge amount of time for someone to learn a new technology, but you want to make sure that it’s something that your hospital and your provider feel comfortable have tried and know that it’s secure and safe and useful. You don’t want to go off and do something that your provider has no connection to it, you really want to keep these as integrated as possible, and in that way, I think in the future, we won’t just rely on Mr. Marks, you have to come in to the hospital for every single thing. We want to give you all these tools, and then you and your doctor can decide which things you really have to come in person for and which things you can access online.

And so that is the conversation that every time you go talk to a new provider or go to a new hospital or clinic, you should ask, what technologies do you have that are available to the patients? And that that’s how I think we’re going to push forward our new model of cancer care, which I will hope will use the technology to allow patients to collaborate with their healthcare team more easily and more seamlessly and in a way that’s safe and secure.

Dr. Farrukh Awan:

This partly answers the question that Christine raised, that she’s in Hawaii and she wanted to get an opinion at California, and that insurance company denied her referral to the doctor in California, so for Christine, what I would say is exactly like Dr. Kim was saying that we should definitely ask your insurance company what kind of tools you have for remote encounter, I think you should press them a little bit, and if they say absolutely not, we are not covering that. So, then I think in that case, the doctor sometimes can make a suggestion or write a small note to the insurance company that I would be okay with sending the patient for a second opinion.

The third thing you could do is there are lots of societies now in groups now, where you can ask for a remote consultation, and I actually do that for my patients, I get invites from different groups and they say, okay, fine, doctor, can you set up a 15, 30-minute telephone consult to a third party. So, they don’t charge you anything. They don’t charge me anything, they just set up a time and I volunteer my time, and I can connect with my patients in New York and wherever they are, and then if they decide that they want to come down, that’s up to them if insurance approves it, if they want to get care locally, that’s fine, but at the very least, that allows you to talk to somebody face-to-face, they can talk to you about your specific situation, they can suggest what kind of tests you might benefit from.

So, there are all of these tools that are available, I think you just have to search for them a little bit on the Internet at these different societies which provide that service of remote consultation. I know that I do that. The other question, I think they’re all similar to these questions, and I’ll try to go through them quickly, is that well, if I’m sick, what happens if I’m far away? So, a lot of times, we can call in prescriptions and medicines on the phone to prevent you from having symptoms from the disease, and that can be used at home. It’s always good to have a local doctor or a primary care doctor close to where you are, so in the event that you have to get admitted to the local hospital, you have that connection with them.

So, it’s always nice to have one quarterback directing the care of your cancer, but at the same time, having somebody local would also be helpful in these emergencies, hopefully, we won’t be able to have the way the treatment is evolving, I think you would have less and less of those problems, because treatments are so well tolerated, but occasionally, obviously, you can have problems which might need local consultation, and that’s perfectly fine.

We always transfer our patients to the main center once they get admitted to the local hospital for any reason, if that’s required. So, we can work very closely with the local team, and I think that’s really what you want, you want a doctor who’s willing and able to do that. And similarly for CAR-T patients, there was another question that was asked. CAR-T is much more complicated than your regular chemotherapy or immune therapy or the new molecules that we have. I think that’s something that we would like to stress that for CAR-T therapy, since it’s so specialized, it’s always important to have the guy who did it call the shots because testing is specific, the management complications are very unique to CAR-T, so I think that is an option for remote monitoring for those patients but they have to be very closely followed, we can do that.

And so similarly, I feel that right now with the way things are, it should not matter if you’re in a rural area or an urban area, I feel that everyone should have access to all the modern therapies, and people should be able to benefit from them equally. You just have to ask, and there are experts in pretty much every state, and if your state doesn’t have an expert, you can try this remote or remote consultation business.

And then one last thing that I would like Mr. Marks to chime in this is how it works. So, when do you know when to get help? So how did you know that you needed help for your CLL when you did take the decision to go ahead with treatment, obviously one part is the physician telling you but what about your own self, how were you able to know on your own that I think I might be getting to the point where I need to do treatment?

Mr. William Marks:

Well, I started from the beginning, I started doing everything. I started reading everything I could, I started trying to research everything, I changed my eating habits, I lost weight, I did everything I could personally, but I knew that the CLL that I had, I could not conquer by myself and alone. And so that’s when I knew, you can do everything you can, you can take all the herbs and supplements and everything you can, but then CLL is something that you really like you said, you need someone who specializes in it to know. And like I’m saying Dr. Awan you can let them know how I’m doing right now. I know HIPAA and all that, but I’m really doing real well after six years, and I do believe that Dr. Awan saved my life.

Dr. Farrukh Awan:

Well, thank you for that compliment. I think we’re just a tool in this whole process, but my suggestion and recommendation to everyone is, it’s half and half, it’s 50/50, it’s a partnership. Half of the times it’s the patient listening to their body, looking at the lumps, seeing how they feel, and half the time it’s us looking at the blood work, looking at the lymph node size, the spleen and all of that stuff and putting it all together before we make a decision. So, these decisions are not made in isolation. It has to be made as a team. And this is exactly where trust comes in. So, with that, we will try to wrap it up, and so any last thoughts, we’ll start with Dr. Kim and then William, I’ll ask you to just give your thoughts so that our audience can benefit from those.

Dr. Kathy Kim:

Thank you. It’s really been a pleasure to be part of this conversation with all of you, I think my last thought is really for patients to see technology as a tool that can help you communicate, organize information about your health and be as proactive as possible for the things that you can control, as Mr. Marks just talked about all the things that you can do to improve your health. But be an advocate for yourself and ask your hospital, your doctor, your provider organization, what technologies can you give to me, what technologies can you offer me, and even if they don’t have a whole lot, at least they know that you want it, and then they may then invest in tools for patients like yourself, so first, use the technology that you’re comfortable that your doctor is comfortable with, and second, be an advocate and demand the things that you want to have access to.

Mr. William Marks:

Well, I would just like to tell everybody, first of all, thank you Dr Awan for having me on this panel. Dr. Awan and his staff have been just outstanding for me. My diagnosis is positive at a six-year stent with CLL. I do believe in my heart, I would live a very long life, and I don’t believe that I would have if I hadn’t found the right doctor that had the right plan for me. So, just to make sure that you know that you get the right doctor for you that you can trust, because you have to have 100% trust in your physicians, and I do have that in my doctor. So, I have a very prognosis, CLL is not your ending, I’m telling you, I’m a believer that you can conquer anything if you believe that you can, and I’m on that path now, so I just like to close with that.

Dr. Farrukh Awan:

Awesome, and with that I would like to thank everyone for tuning into the program today, and as I mentioned earlier, we will break this down into small segments, and recording of this program will be available for people who might want to listen to it at a later time in smaller clips, and that will be available at the Patient Empowerment Network’s website, and if you like to watch again, it should be there. So, thank you for joining us today. I wish you all the best of health and good afternoon and I’m Farrukh Awan from Dallas, Texas so goodbye.

Digital Advocacy and Health Equity for CLL Patients

Telemedicine or telehealth – remote access to healthcare – has become widely used after the arrival of the coronavirus pandemic, especially by cancer patients. But the rise in telemedicine has also brought challenges to the vulnerable populations of Americans over age 65 and to low-income Americans who have struggles getting online. 

Among patients who are over age 65, only 55 percent to 60 percent of them have broadband access from home or own a smartphone. These patients also have challenges with completing information online, with only 60 percent who have the ability to send an email, to complete a form, and to locate a website. Among low-income patients, only 53 percent are digitally literate, and they also have lower rates of Internet use, broadband access, and smartphone ownership compared to other patient groups. 

Empowering Vulnerable Communities

As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) is working to foster change toward achieving equitable healthcare for all. In order to provide practical usage of telemedicine tools, PEN created the TelemEDucation Empowerment Resource Center for chronic lymphocytic leukemia (CLL) patients and their loved ones. Another resource, the digital sherpa™ program, helps cancer patients and their families become more tech-savvy by learning to use technology to their advantage during their cancer journey and beyond.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to CLL patients:

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits:

  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time so that you aren’t rushed when your appointment time arrives.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late.
  • Try your best to remain flexible and to be patient.
  • Try to write down your questions before your appointment to keep on track about things you want to learn during your visit.
  • Remain focused on the main purpose of your visit as much as possible. Polite small talk is fine but keep it to a minimum so that you can get the most out of your visit. 

CLL Patients Who Benefit the Most From Telemedicine

Not every CLL patient will be a good fit for telemedicine visit. Things to keep as top of mind for telemedicine visits:

  • CLL patients who are on active surveillance from their care providers are a natural fit for telemedicine. They can get periodic blood tests from a local laboratory, and the results can be sent electronically for their CLL specialist to evaluate.
  • Patients with high-risk genetic features or rapidly progressing CLL are not the ideal patient for care via telemedicine.

In the time of the coronavirus pandemic, remote monitoring has become part of standard healthcare terms. Some things for CLL patients to know:

  • Though it may be a new healthcare method for many patients, monitoring has actually been used for decades in the care of CLL patients and others with suppressed immune systems.
  • Remote monitoring is used to reduce the risk of infection to those with reduced immune system function, such as those with cancer and CLL.
  • Remote monitoring is a completely safe medical practice for CLL care when a patient’s blood work is monitored on a regular basis. Always ask your doctor if you’re unsure if you’re a candidate for remote monitoring or if you have questions about the frequency of your blood tests.

How Telemedicine Can Improve CLL Care

Now that even more CLL patients have become accustomed to using telemedicine care tools, CLL experts are looking to the future. Looking ahead:

  • Telemedicine can help CLL patients who live in very remote areas to gain access to clinical trials that weren’t accessible to them in the past.
  • CLL therapies will continue to improve for patients as a higher percentage of CLL patients participate in clinical trials.
  • The improvements in remote monitoring will bring more tools for CLL patients to do routine things like sending their heart rate and other things to their care provider in real time. 

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools are gaining both in usage and numbers, CLL patients can feel hopeful about improved care and treatment toward the future. As a step in that direction, take advantage of the resources below and continue to visit the TelemEDucation Empowerment Resource Center for informative content about CLL and telemedicine.


Resources for Telemedicine and CLL

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

What Subset of CLL Patients Should Utilize Telemedicine?

Will Telemedicine Be Part of Routine Management for CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

What CLL Population Will Benefit Most From Telemedicine?

Remote Monitoring

TelemEDicine ToolBox Visit Checklist

TelemEDicine ToolBox Glossary

 

Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Activate More Remote Monitoring for CLL?

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

What CLL Symptoms Can Be Monitored via Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

digital sherpa™ program

Extended Quick Guide to Medicare

This guide was originally published by our partner, Triage Cancer, here.

2021-Health-Insurance-Medicare-Quick-Guide

Quick Guide to Health Insurance Options

This guide was originally published by our partner, Triage Cancer, here.

2021-Health-Insurance-Options-Quick-Guide

Financial Resources for Patients and Families

Financial Resources

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.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

What CLL Symptoms Can Be Monitored via Telemedicine?


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)

Navigating CLL Treatment Decisions

Download This Guide

PEN-115_InfoGraphic_CLLToolkit

Download This Guide

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia (CLL) patients, telemedicine has emerged as an option that requires new ways of working with their health team. Watch as CLL expert Dr. John Pagel shares his advice to patients and caregivers for getting the most out of telemedicine visits.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

What CLL Symptoms Can Be Monitored via Telemedicine?


Transcript:

Stephanie Chuang: 

You had mentioned, patients need to be prepared when they come to their telemedicine visits, doctors have limited time, of course. So what are your top three tips or so for patients and their caregivers who are preparing for their telemedicine visit?

Dr. John Pagel: 

So here’s a good important thing to say around that. Number one, you know, what happens is you’ll get told you have a telemedicine visit at 10:00 AM on Tuesday. And so you’re looking forward to 10:00 AM on Tuesday. And 10:00 AM comes around, and you’re waiting by the phone, and it doesn’t ring immediately, or the Zoom doesn’t come up immediately, please understand you have to be a little bit flexible with your physician. Just because it says that time…it’s the same thing kind of like in the clinic, it all kind of flows and works together. And so please be flexible and be patient. Not accepting excessive delays, that’s not really cool, we get that, but it’s often very hard to be right on the dot at 10:00 AM. So number one, be flexible. Number two, have your questions written out or focused about what you want to learn and understand that visit. It may not be a lot different than the last visit, that’s okay. But if you don’t have those, often, what will happen is that when the visit’s over the phone is hang up or the Zoom call is put away, you’ll remember, “Oh, I forgot to ask X, Y, or Z.” don’t let that happen.

And the way you don’t let that happen is to be focused there with what you want to learn. And then lastly, if it’s possible, don’t be excessive. Meaning that, focus on the things that are important, meaningful, relevant to what’s happening to your health, your disease in your interaction with your physician. There are things that we all can list that could be very, very long in the list, but many of them aren’t going to be something that the physician can get to in a very meaningful, important way. Ask though, if you can’t get to those things that are important, that you try and follow up with them very quickly, perhaps in another visit relatively soon. But keep your expectations, if you could, to a very realistic approach, directed and focused on taking care of you and managing your CLL. 

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients? from Patient Empowerment Network on Vimeo.

With telemedicine as a part of the chronic lymphocytic leukemia (CLL) toolkit, what will its role be in the future? Watch as CLL expert Dr. John Pagel shares his viewpoint of how telemedicine will play into long-term survivorship care for patients.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

What CLL Symptoms Can Be Monitored via Telemedicine?

 

Transcript:

Stephanie Chuang: 

We really haven’t scratched the surface, it seems, when it comes to using telemedicine as a long-term survivorship tool. So for the sub-group of CLL patients who never need treatment, does telemedicine still bring any major advantages?

Dr. John Pagel:

There are people, and it’s not uncommon, who actually never even get treated. I’ve had people in my clinic who have had CLL diagnosed and never treated for over 20 years or more. It does happen. And those people often can be managed with their primary care physician, even though it’s good to have a CLL focused clinician, an oncologist or even expert in their back pocket, but they may only need to have that televisit with that expert or oncologist once a year. So those are the ideal kind of patients who it’s not great to drag them in if there’s nothing going on with them, but they still need to be evaluated and have a discussion about what’s happening, at a minimum once a year in many cases. 

What CLL Symptoms Can Be Monitored via Telemedicine?

What CLL Symptoms Can Be Monitored via Telemedicine? from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia (CLL) patients, some symptoms can be monitored via telemedicine, while other symptoms are best to check in-person. Watch as CLL expert Dr. John Pagel discusses getting optimal care by CLL symptom type.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

Stephanie Chuang: 

There are CLL patients on specific treatment protocols and those who need follow-up for potential adverse effects of treatment compliance and, of course, progress. And so the question is, how effective of a tool is telemedicine for this group?

Dr. John Pagel: 

I’ve been very impressed that we can meet the needs of patients, we can meet the needs for clinical trials. Clinical trials have really adopted and been flexible with the idea of being able to do telemedicine in a large degree because of COVID in CLL. And I would say clearly that a conversation and close discussion with the physician’s critically important, it comes back to what we mentioned specifically, it’s about education. Patients need to understand that if they’re not feeling well, meaning, they’re having drenching night sweats or they’re losing weight or they’re having pain, those aren’t things to sit back and just wait for your telemedicine visit, they need to contact the physician and to be able to be seen urgently or quickly if needed. 

Telemedicine is going to be a bridge to make that happen, but in general, those are people that are in a bit of a different class of what we’re discussing here today. So monitoring disease, taking care of people with regard to assessments of their blood counts can be done all again through telemedicine, but more acute problems, those patients do, of course, need to be seen. 

Telemedicine Challenges and Opportunities for CLL Patients

Telemedicine Challenges and Opportunities for CLL Patients from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia patients, some challenges have emerged with care via telemedicine. In this telemEDucation program, CLL expert Dr. John Pagel explains opportunities for patients and providers to optimize these visits.

See More From the CLL TelemEDucation Empowerment Resource Center

Related Resources:

 

What CLL Population Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

 Stephanie: 
Let’s highlight both the challenges and opportunities that come with telemedicine. So first, it does seem to be reshaping the traditional CLL doctor-patient relationship to some extent, and you’ve touched on this. So with your experience as a CLL expert, what are the limitations of telemedicine?

Dr. John Pagel: 
Well, one of the, of course, things about telemedicine is it’s not just figuring out how to do it from the provider’s standpoint, but it’s also figuring out how to do it from the patient’s standpoint. So we can’t expect, to be honest, that this goes just like it would if you were in the clinic, sitting on the exam table with your physician there at the computer right next to you in that exam room, it shouldn’t be expected that it’s going to go like that. And unfortunately, to this point, we’re trying to figure out that. It doesn’t do that. And so that takes some alteration in our approach, on the provider’s side and on the patient’s side as well – and in particular, what the expectations are for these patients and for the providers.

So it needs to be very focused, and it needs to be concise. So what is my message there? For the patient’s side, know that the doctor’s busy, they’re doing their work all day long with lots of sick people potentially, and so they need to be very focused on what the issues are and the direction of the conversation. So come prepared to a telemedicine visit, if you’re a patient. Come prepared to know what you want to talk about and what the focus is with the priorities that you might have that are issues for you around your CLL disease. And the provider will do that hopefully as well. It’s a learning thing. But I will tell you, the first time will take a little bit of learning. By the second, third time that you’re actually interacting with your doctor, that same one-on-one relationship, it really