Tag Archive for: UC Davis School of Medicine

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

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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?

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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?

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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?

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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.