Tag Archive for: telemedicine

Is Telemedicine an Advantage for Low-Risk Breast Cancer Patients?

Is Telemedicine an Advantage for Low-Risk Breast Cancer Patients? from Patient Empowerment Network on Vimeo.

 For low-risk breast cancer patients, is telemedicine an advantage? Expert Dr. Regina Hamptonfrom Luminis Health Doctors Community Hospital shares her views on when telemedicine makes sense for low-risk patients and the benefits she’s seen for patients’ quality of life.

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Transcript:

Dr. Regina Hampton:

I think it helps to eliminate a lot of those in-person visits, which then means they can enjoy life. We want them to enjoy life after surviving their breast cancer diagnosis and treatment. So maybe they’re doing their televisit while they’re on vacation or while they’re out of the state, visiting with relatives. So it really allows them to be able to stay in tune and in touch with their healthcare providers, stay on top of their visits, but allow them the flexibility to continue to live life. I often tell patients, “Look, after we’ve treated you, we don’t want you in our offices all the time. We want you out there living life.” And if we can make that easier by doing a quick tele visit, especially if there’s not something serious going on, then I think that’s a great advantage. And I think as we move deeper and deeper into the telemedicine world, I think patients are going to appreciate that, and they’re going to actually demand it and say, “Well, you know, I’m doing fine, I just need you to look at my mammogram and us to have a quick discussion while on a cruise or while I’m on the beach in Hawaii enjoying some time with my family.” So, I think it’s opened up a new world, and it’s just going to get better and more easy, and I think patients are going to shift their brains to say, “You know, if I don’t have to be in an office somewhere, I’d rather be on a video or a phone visit.

Which Breast Cancer Patients Benefit Most From Telemedicine Visits?

Which Breast Cancer Patients Benefit Most From Telemedicine Visits? from Patient Empowerment Network on Vimeo.

Dr. Regina Hampton  from Luminis Health Doctors Community Hospital provides her perspective on care situations when patients can benefit the most from telemedicine – and when in-person visits can provide an advantage.

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Transcript:

Dr. Regina Hampton:

So, I think when we look at new patients, newly diagnosed, I think an in-person visit is certainly advantageous, I think people certainly want to meet their doctor in-person, what I found personally is after that initial visit, then we’ll convert the rest of the visits by telemedicine. As the patient is willing, if they want to come in, I’m happy to have them come in, where I think it’s really beneficial is in survivorship after the patient has gone through treatment, and she may still be following with her medical oncologist, because she’s on hormonal therapy. Or she may be on some form of chemotherapy, and maybe she wants for me to be able to take a look at her mammogram. Well, I can still do that because I can remotely access those films, and then we could do that television, and if she’s not expressing any concerns, then we can do that as a television, so this helps, especially for those patients in survivorship where they’re not going to three and four different doctors on a regular basis. They’re going to that one doctor, they’re getting that in-person visit, and then some of the other providers are part of the team can maybe move theirs to telemedicine visits, so again, I think it helps to keep patients with that connection to some of those without again, having the burden of taking time off of work, having to arrange childcare, they can do those other visits by telemedicine. And that’s something new that we weren’t doing pre-COVID, patients were having to come into the office and see every single provider for every six months for the first two to three years after their diagnosis, so I think that really has made it more convenient for the patients, and it’s really allowed us to really streamline our operations on the provider side, which then allows us to be able to serve more patients.  

What Opportunities Does Telemedicine Present for Breast Cancer Patients?

What Opportunities Does Telemedicine Present For Breast Cancer Patients? from Patient Empowerment Network on Vimeo.

Does telemedicine present certain advantages for breast cancer patients? Expert Dr. Regina Hampton from Luminis Health Doctors Community Hospital shares benefits that she’s seen in the breast cancer community and her perspective about the future of telemedicine. 

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Transcript:

Dr. Regina Hampton:

I think telemedicine has been great for the breast cancer community. I found in my personal practice, I do quite a number of visits and conversations prior to starting the first treatment. So, what’s nice is because we know the patient may be seeing several different providers, I do my initial visit and then the subsequent visits leading up to, say, surgery, we do by telemedicine. And what’s great about that is it allows us to dial in another support person, you can usually dial in at least two or three more people who can be a part of the conversation and hear the discussion, it also allows the patient to really…if they’re working full-time to be able to save that time, because maybe there’s another provider that they have to go see or they have to get their pre-op work-up. So it really just provides more access. And then if they just have a simple question, they don’t have to make a whole visit, take off half of their day and travel. We can either jump on the phone or jump on a quick video call, so I think it really has just opened up for not only the patients, but also the providers, and just given more access to care and really allows, I think us as providers to really meet people where they are. I’ve had people who’ve traveled or they had to go take care of a sick loved one, and we could jump on a call to do our office visit, and they could still do the things that they needed to do that may have come up unexpectedly. So, I think telemedicine is here to stay, and I think it’s only going to grow and grow and really provide more patients with access to providers. 

An MPN Expert’s Top Three Tips for a Telemedicine Visit

An MPN Expert’s Top Three Tips for a Telemedicine Visit from Patient Empowerment Network on Vimeo.

As a myeloproliferative neoplasm (MPN) patient, what steps can be taken to prepare for telemedicine visits? ExpertDr. Jamile Shammofrom Rush University Medical Center provides her key tips to help ensure an optimal telehealth visit. 

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Dr. Jamile Shammo: 

When preparing for a televisit, I think it’s so important to know whether or not you would have a connectivity issue. A lot of times I’m trying to connect with the patient and then we realize that their phone isn’t equipped to handle the televisit and that is kind of disappointing to find that out a minute before you try to connect then that visit becomes a telephone encounter, which is again, less satisfying for some patients. I mean it does the job, but again, it doesn’t provide me with the exam…part of the exam that I’d like to do, at least in that way. So, I think prepare yourself and make sure that your device is able to connect and actually most clinics will have a person that may be able to help you navigate through the televisit pieces that would help you get through and connect with the provider, and then obviously with an MPN or any other visit, patient with a heme malignancy, it would be helpful to make sure that you have a blood draw or if your physician would like to have a blood draw in my case, I always like to have a CBC beforehand or perhaps a chemistry or maybe ion studies or what have you, to have that so that there will be something to discuss and make sure that your physician has had those results before you have the visit. 

Sometimes it is also disappointing that the patient thinks I’ve received those results when I actually haven’t and I have no control over that, so that would be the other piece. All of us do our best so that we can make sure that all those pieces are in place so that we can conduct the visit. And I know it’s a lot of work on everybody’s part. But in the end, what matters is that we are providing the best care possible in those very challenging times. 

What Opportunities and Challenges Does Telemedicine Present for MPN Patients?

What Opportunities and Challenges Does Telemedicine Present for MPN Patients? from Patient Empowerment Network on Vimeo.

For myeloproliferative neoplasm (MPN) patients, what does telemedicine offer in terms of opportunities and challenges? Expert Dr. Jamile Shammo from Rush University Medical Center shares situations when telemedicine versus in-person visits can help provide optimal MPN patient care.

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Transcript:

Dr. Jamile Shammo: 

I think the medicine has provided a tremendous opportunity for us to take care of patients in general, MPN patients in particular during the pandemic. We obviously wanted to minimize the exposure of patients to COVID during the pandemic, but patients who have MPN as well as other hematological malignancies needed to have CBCs frequently to make sure that the treatments that they were on were safe, that they were doing what they were supposed to do in terms of controlling their counts. So, then there was no escaping that. And they also needed to get ahold of their doctor, so being able to do both, perhaps away from the hospital in some type of clinic and being able to connect with the physician online to discuss the results of the CBC that they had obtained in perhaps a less populated lab was tremendous. And granted, this had made it feasible to care for patients during the pandemic. But now that we are sort of emerging from the pandemic, people are realizing that perhaps those technologies are there to stay, and perhaps there’s a subset of patients that may still be able to benefit and take advantage from those resources, so we are learning as we go who may be able to continue to do this. 

I have to say though, that that may not be for every patient, and I still feel like there’s a particular type of MPN patient that will benefit from seeing the physician and having a full exam once every so often. And we can talk about the particular application that that may be, but granted telemedicine has certainly provided a tremendous advantage during COVID.  

So, when I think of the patient that might benefit most from seeing the physician via televisit, for example, it would be someone who perhaps has a stable disease. Someone who I may want to monitor perhaps every three to six months, someone who may have stable counts, and we’re just talking to about their symptoms and monitoring those types of things every so often. And perhaps I look at the labs and you can discuss their symptoms and whether or not they have splenomegaly and issues like that. Someone who may already be on a stable dose of medication and we don’t have to do any dose adjustments and even if we have to do those adjustments, perhaps we could do labs a little more frequently, so that would be all right too, but someone in whom I would like to initiate in treatment, someone in whom the disease may be progressing a little too quickly, someone who I may want to do an exam and assess their spleen, I suppose you could send them to an ultrasound facility and obtain an MRI or a CT, or an ultrasound of the imaging study that is. But there’s nothing like an actual exam of the patient. You are thinking about the disease progression, so those sorts of patients in which the disease is actually changing its pace, you may want to take a look at it, the full smear look and examine the skin for certain TKI and signs and symptoms of low platelets and that sort of thing. Look in the mouth for ulcers and things of that nature. Those are the patients that I feel like would benefit the most from seeing their physician of course, the patient who has questions and that that could be probably beyond what a televisit could do. I think those would be the types of situations where you would like to have a physical presence and discuss things that would be of extreme importance to the patient’s physical health, psychological health, and of course, labs that you may want to obtain beyond the regular CBC that a standard lab could obtain outside of your institution. There are specialized labs that not every leg outside of your own tertiary care center may be able to provide, and that is something that we need to all the time. Let’s say a patient may require a bone biopsy, well then you have to have them physically be in your place, and then you might as well, then see them, examine them and do all of the labs, and that’s the other thing that we would like to do is perhaps to bundle all of the tests that you would be minimizing the exposure of patients to frequent visits so that you would be again, lessening the exposure, potentially infections.

What Impact Does Telemedicine Have on Clinical Trials for MPN Patients?

What Impact Does Telemedicine Have on Clinical Trials for MPN Patients? from Patient Empowerment Network on Vimeo.

For myeloproliferative neoplasm (MPN) patients, what impact does telemedicine have on clinical trial access? ExpertDr. Jamile Shammofrom Rush University Medical Center explains the current environment for clinical trial access and her perspective on how trial access should be approached in the future for improved MPN care. 

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Transcript:

Dr. Jamile Shammo: 

So, there’s no doubt that COVID has certainly impacted our ability to enroll patients on clinical trials. There have been a lot of governing bodies that have created various rules and regulations around that to facilitate enrolling patients on clinical trials, and I think right now we are seeing that this has become feasible, such that we are able to enroll patients yet again on the clinical trial. So, now I think that we have the vaccine that is available, it has become a little bit more feasible and possible to do so. So, this should not stop us. I think we should continue to seek better treatments for MPN patients actually the only way to do so is by you know, only patients on trials, because we certainly don’t have a perfect way to provide care at the moment, we always need to come up with better ways and that would be one way to do so. 

The MPN community truly should partner with their physician and learn as much as possible about their disease and about available treatment options, and perhaps show some support for available clinical trials because this is the only way that we can perhaps understand how we can do a better job in treating patients who have MPNs. 

How Can Lung Cancer Patients Ensure Quality Care No Matter Location?

How Can Lung Cancer Patients Ensure Quality Care No Matter Location? from Patient Empowerment Network on Vimeo.

Now that lung cancer patients have access to in-person and telemedicine visits, how can they ensure quality care no matter location? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanyashare their advice on maximum travel times to in-person providers, when telemedicine visits make sense, and how to ensure you get the best fit for you as a patient. 

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Dr. Nicole Rochester: 

You mentioned telehealth, and we know that one of the barriers to receiving care, and you’ve indicated that in terms of having access to a multi-disciplinary team, having access to thoracic surgeons as opposed to general surgeons. So, we know that that is impacted by where we live, and that often our geographic location can actually be a barrier to the receipt of quality care, so I’d love for you to just talk a little bit about how patients who may be in more remote locations can make sure that they are also receiving appropriate care for their lung cancer. 

Dr. Olugbenga Okusanya: 

Yeah, I think this is a very substantive challenge, I think this is one of the holes in healthcare, there are these regions in the country where you just are not going to have access to any number of surgical sub-specialists or radiation oncologists, or lung cancer specific oncologists. I think that is a really big challenge. I think we have actually learned through the pandemic that the physical barriers really are not the reason to not get the best care, so I think those patients should be exquisitely interested in telehealth and in phone calls, and I think most healthcare systems now, because the reimbursements have been approved for telehealth and actually now built infrastructure to support it as an ongoing concept. So now, if you are a patient that’s in Arizona and you want to talk to a doctor who’s in New Jersey, you can do that, you can make that happen. If you find someone, you Google them, you find a friend in that area who knows someone, you can call their office and say, “I want to have a telehealth visit.” And as long as you have broadband Internet and a phone, you can do it. You can have that conversation. 

So, I would advocate for people to really make sure that you at least feel like people in the sort of local regional area that you can perhaps get to maybe two, three hours away. But you can imagine a scenario where you can get there, you can try and establish some level of care and some level of rapport with them. I think that’s something that has really opened, has been one of the few good things to come out of the pandemic. 

Dr. Nicole Rochester: 

I was going to say the exact same thing. That is one…there haven’t been a lot of positive things, but that certainly is one of the positive outcomes of the pandemic, is this surge, and it’s not that we already had the capability, but it certainly was not being used to its maximum capacity. I appreciate that. So, speaking of telemedicine and COVID, I think one of the challenges that patients and often care partners have is understanding when is a telemedicine or telehealth visit appropriate versus when do you actually need to go see that doctor in-person, so…can you help clarify that? 

Dr. Olugbenga Okusanya: 

Yeah, so I think in general, even if you start with the telehealth is, I think there’s very little downside to telehealth for almost anyone in general, because a lot of the information can be garnered from the patient record, from their scans. I think in general; it gives you 85 percent of what you need out of that interaction, and it may be more convenient for the patient, a lot of times it’s actually more convenient for the doctors, doctors have now found ways to work from home. They do have to have their clinic from home, it’s a much more relaxed environment than more efficient. I think there are times like for instance, I have to make decisions about offering surgery to patients who I consider to be moderate or high risk, I think there is a benefit and having that patient come and see me in the office because they have to somehow pass what we call the eyeball test, and that is a little bit of where this disparity comes in in lung cancer surgery, because it depends on whose eyeball is looking at you, making your determination about what they think is going to happen with you in surgery. 

I remember…actually one of my favorite patients ever. She had data that did not look like she would tolerate surgery, everything about her data did not look favorable. And I saw her, I remember seeing her in-person, and you could see the spark in her eye and energy that she had, and I said, “You know what, we’re going to do it.” And she did great, she did phenomenally well. And that is a case where if you’re in the population of patients that may be slightly more moderate, slightly more high-risk, and you need someone to really look you in the eye and you say, “I’m going to do what it takes to get through this.” I think that’s the patient where the in-touch, in-person visit really is that extra touch that can be benefited. 

Dr. Nicole Rochester: 

Wow, I love what you said about the spark in her eye and also how you connected that to health disparities, and I don’t know the race or ethnicity of the patient that you’re describing, but we certainly know that that makes a difference, and I just wonder if that had been a different physician, would they have seen that same spark? And I think it just goes back to what we were talking about earlier, and the importance of finding a physician or health care provider with whom you connect, someone that actually respects you, someone that listens to you and sees you as a whole person. So, the fact that you were willing to go beyond that data on her chart, which screamed, This is a poor surgical candidate, met her in-person, and something about her let you know that she was going to be okay. 

Dr. Olugbenga Okusanya: 

And that’s why in medicine and surgery are still art at the end of the day, it’s still an art. You make decisions, best informed decisions, but there’s a lot of it that is still really special and mystical in a way. And I think having that in-person interactions will let you practice that and it’s exactly what you said, you want to have a really nice relationship with the physician, especially anyone that’s going to be doing anything that might be invasive or dangerous because for the most part, you meet someone for 45 minutes and then you sign up for what could be a life-threatening event. So, you, the physician and the patient should feel really good about that interaction and whatever that energy is, it’s really important, it’s a little bit kind of sacred, I think, and I think it’s really valuable to invest in that if you don’t like the surgeon, you really don’t feel like it’s a good fit or you don’t like your oncologist, find someone else. You’ll do better in the long run, for sure. 

Dr. Nicole Rochester: 

That is so incredibly important. I agree, 100 percent. So much of healing is beyond just the nuts and bolts of the medical care that we provide, or in your case, the surgical care, there’s so much more to that, that’s not really well studied, but that relationship and that connection is key. 

Dr. Olugbenga Okusanya: 

Critical, and that’s not to say that necessarily the person has to be like the warmest, friendliest, the most fun person you ever met, some people prefer a more yes ma’am, no ma’am, clear-cut, well-defined boundaries of a relationship. Some people prefer a big hug and a laugh and a joke. So if you’re getting what you need, that’s exactly what you need. And if you’re not getting what you need, you should think about your other options 

What Barriers Do Prostate Cancer Patients Face When Seeking Care?

What Barriers Do Prostate Cancer Patients Face When Seeking Care? from Patient Empowerment Network on Vimeo.

What barriers do prostate cancer patients face in gaining access to care? Host Dr. Nicole Rochester and Dr. Yaw Nyame and Dr. Petros Grivas share their perspectives on factors that impact access to care and ways some barriers can be removed to improve prostate cancer care.

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How Can I Get the Best Prostate Cancer Care No Matter Where I Live?


Transcript:

Dr. Nicole Rochester: 

Drs. Nyame and Grivas, we know that location, socioeconomic status, insurance, financial hardships, lack of urologists in rural areas, geographic distance services and access to transportation all play an important role in the outcomes for patients and families facing a prostate cancer diagnosis. So, I want to start with our first question, and we’ll start with you, Dr. Grivas, what are some of the barriers, both prostate cancer patients and their care partners face when seeking care? 

Dr. Grivas:

The number of those factors have to do with the location of the patient as you mentioned, patients regardless of race, if they live in a rural community, then they have less communication or contact with a medical care system, and that’s in all reality there’s data suggesting that a cruelty to states this access to care issue is becoming more and more noticeable, and the distance involved in some ways to get a medical facility, let alone a specialized medical facility, specialized in-person culture. It can be a big problem. The other issue that we have seen many times, again, in some communities more than others, is a healthcare literacy and the preventive mindset as I call it, and that again, can transpire across races, but maybe even more intense in some of the populations. And when I talk about health literacy and preventive mindset, it’s about the relationship, an individual of the healthcare system, and sometimes the distrust, right, that may take place and also the, I would say comfort that the patient has to enter and access a medical care system that they can allow the providers to take care of them, and these are real, I would say, examples that we have seen based on having this concern of letting sales be taken care of in a medical system, competing problems and barriers include financial contraction, that’s a big one.  

Insurance coverage. We know that patients who…I would say social determinants of health may have not very good coverage, and this may be restricting award medical facilities that they can access, and also the cost of care, co-pays, for example, when diagnostic tests or acute interventions for orderly available agents can be a big carrier and no compliance can be diminished with co-pay. Of course, you mentioned many other factors, transportation issues, finding coverage of work, getting day off work can be a problem for some patients, and also the cost of transportation or lodging or parking sometimes can be a problem or even the anxiety to go to a big city and deal with a traffic, of course. So there are many factors, of course, but I think we have to have a systematic approach how to catalog them and address them in a comprehensive way, and I think there are some improvements and we can talk about them today, for example, telemedicine and others, but I think the list is long, and we have to keep an open mind and engaged patient advocates in cataloging those barriers. Maybe Dr. Nyame can comment further in that regard. 

Dr. Nicole Rochester: 

You covered a lot of ground, and I appreciate that. Dr. Nyame, I’d love for you to either add to that list or maybe expand based on your perspectives. 

Dr. Nyame: 

Dr. Grivas didn’t leave me with much to cover, which is great. I think what you hear, in his answer to that question is that this is really a social issue, and I think when we talk about inequities in health, we have to recognize that race in this country, and many places around the world really reflects a social construct, and so the things that really predict how people are going to be able to utilize our services and how well they’re going to do reflect that greater social context, and so to me…you have to meet the patient where they are. And the strength of the relationships that you can build between the healthcare system and the communities that are at risk, especially the ones that have the highest disproportionate risk of bad outcomes or not being able to utilize services is important. And so the barriers include all the things we talked about, but a lot of them that we’ve talked about have been very much healthcare-facing, so we talk about transportation, what we mean that in the source of transportation to our facilities or we talk about money, but we talk about money and the ability to pay for our services, we also miss the other ways in which those social barriers and factors impact the ability to prioritize one’s health. 

Dr. Nyame: 

And so that is a really big problem. And something that we also need to put in the context of this conversation. I think when we take the covers off and we really see what our patients’ lives are like, sometimes we recognize that it’s not just about their ability to utilize the services that we provide, but that there are bigger issues at hand that also need addressing. Those aren’t in Dr. Grivas and I’s domain, but I think we have to understand those things to meet our patients where they are. 

Dr. Nicole Rochester: 

Absolutely, I really appreciate that both of you have really focused on those social determinants of health. I appreciate you mentioning racism, and the fact that the patients being able to prioritize their health, I think historically in medicine, we have blamed our patients for not taking care of themselves, so to speak, without a full appreciation of all of these barriers that both of you have just identified, so I really appreciate that. 

How Can I Get the Best Prostate Cancer Care No Matter Where I Live?

How Can I Get the Best Prostate Cancer Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients ensure they get quality care even if they live in rural areas? Noted experts, Dr. Petros Grivas and Dr. Yaw Nyame share advice and discuss how to receive optimal care no matter your geography or financial status. Learn about resources and digital tools you can utilize to ensure better care no matter where you live. 

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Transcript:

Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, your host for today’s Patient Empowerment Network program, and we are so happy that you’ve tuned in. Today we’re going to be talking about how prostate cancer patients can truly get the best care no matter where you and your family live, we’re going to talk about things like how can I remove roadblocks in my care to gain access to state-of-the-art treatment? Will my insurance limit me if I wanna get a second opinion as a care partner, how do I best advocate for my loved one and is a clinical right for me? The answers to some of these questions we receive revolve around awareness, feeling empowered to ask questions and connecting to the right resources at the right time. In this program we’ll be learning just that as we meet our experts. It is my honor and privilege to be joined by Dr. Petros Grivas, Associate Professor and clinical director of the genitourinary cancer program at the University of Washington. And Dr. Yaw Nyame, Assistant Professor in the Department of Urology at the University of Washington. Thank you so much for joining us today, gentlemen. 

Dr. Nyame:

Thank you for having us. 

Dr. Grivas: 

Thank you so much for having us. It’s an honor and pleasure to be with you. 

Dr. Nicole Rochester: 

It is my honor as well. Please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team on the best options for you. Now, let’s take a few minutes to set the stage and give a brief overview of barriers in the way of achieving equitable prostate cancer treatment. Doctors Nyame and Grivas, we know that location, socioeconomic status, insurance, financial hardships, lack of urologists in rural areas, geographic distance services and access to transportation all play an important role in the outcomes for patients and families facing a prostate cancer diagnosis. So, I wanna start with our first question, and we’ll start with you, Dr. Grivas, what are some of the barriers that prostate cancer, let me do that one again. What are some of the barriers, both prostate cancer patients and their care partners face when seeking care? 

Dr. Grivas: 

Thank you so much. These are really important discussions, and I’m glad we’re doing this program. I think you covered a number of those barriers in your introduction, and I would definitely agree with all of them because many of them are important. The number of those factors have to do with the location of the patient as you mentioned, patients regardless of race, if they live in a rural community, then they have less communication or contact with a medical care system, and that’s in all reality there’s data suggesting that a cruelty to states this access to care issue is becoming more and more noticeable, and the distance involved in some ways to get a medical facility, let alone a specialized medical facility, specialized in-person culture. It can be a big problem. The other issue that we have seen many times, again, in some communities more than others, is healthcare literacy and the preventive mindset as I call it, and that again, can transpire across races, but maybe even more intense in some of the populations. And when I talk about health literacy and preventive mindset, it’s about the relationship, an individual of the healthcare system, and sometimes the distrust, right, that may take place and also the, I would say comfort that the patient has to enter and access a medical care system that they can allow the providers to take care of them, and these are real, I would say, examples that we have seen based on having this concern of letting sales be taken care of in a medical system, competing problems and barriers include financial contraction, that’s a big one. 

Insurance coverage. We know that patients who… I would say social determinants of health may have not very good coverage, and this may be restricting award medical facilities that they can access, and also the cost of care, co-pays, for example, when diagnostic tests or acute interventions for orderly available agents can be a big carrier and no compliance can be diminished with co-pay. Of course, you mentioned many other factors, transportation issues, finding coverage of work, getting day off work can be a problem for some patients, and also the cost of transportation or lodging or parking sometimes can be a problem or even the anxiety to go to a big city and deal with a traffic of course. So there are many factors, of course, but I think we have to have a systematic approach how to catalog them and address them in a comprehensive way, and I think there are some improvements and we can talk about them today, for example, telemedicine and others, but I think the list is long, and we have to keep an open mind and engaged patient advocates in cataloging those barriers. Maybe Dr. Nyame can comment further in that regard.  

Dr. Nicole Rochester: 

Thank you so much, Dr. Grivas, yeah, you covered a lot of ground, and I appreciate that Dr. Nyame I’d love for you to either add to that list or maybe expand based on your perspectives. 

Dr. Nyame:

Dr. Grivas didn’t leave me with much to cover, which is great. I think what you hear, in his answer to that question is that this is really a social issue, and I think when we talk about inequities in health, we have to recognize that race in this country, and many places around the world really reflects a social construct, and so the things that really predict how people are going to be able to utilize our services and how well they’re going to do reflect that greater social context, and so to me… You have to meet the patient where they are. And the strength of the relationships that you can build between the healthcare system and the communities that are at risk, especially the ones that have the highest disproportionate risk of bad outcomes or not being able to utilize services is important. And so the barriers include all the things we talked about, but a lot of them that we’ve talked about have been very much healthcare-facing, so we talk about transportation, what we mean that in the source of transportation to our facilities or we talk about money, but we talk about money and the ability to pay for our services, we also miss the other ways in which those social barriers and factors impact the ability to prioritize one’s health. 

And so that is a really big problem. And something that we also need to put in the context of this conversation. I think when we take the covers off and we really see what our patients’ lives are like, sometimes we recognize that it’s not just about their ability to utilize the services that we provide, but that there are bigger issues at hand that also need addressing. Those aren’t in Dr. Grivas and I’s domain, but I think we have to understand those things to meet our patients where they are. 

Dr. Nicole Rochester: 

Absolutely, I really appreciate that both of you have really focused on those social determinants of health. I appreciate you mentioning racism, and the fact that the patients being able to prioritize their health, I think historically in medicine, we have blamed our patients for not taking care of themselves, so to speak, without a full appreciation of all of these barriers that both of you have just identified, so I really appreciate that. 

So we started slightly to talk about solutions, but let’s shift to solutions and what are some of the solutions that you all recommend for some of these barriers, and like you said, as physicians, a lot of that is going to be out of your purview, but I’d love for each of you to suggest any solutions for our patients and care who may be facing some of these barriers, so this time we’ll start with you, Dr. Nyame.  

Dr. Nyame: 

This is an area where I think we need to do better in collecting information to understand where the need is, and so I think there is a very much a need for translational health services or patient-centered research, where we do the simple thing, if I was gonna open up a lemonade stand in the middle of Seattle, I’d probably ask a few people what their needs are around lemonade before I open the stand, and I think in medicine, we often offer our services and solutions without having had that simple conversation of What are the needs? I think in addition to that, we have to understand that equitable care might mean offering additional services for certain populations, so for us at our cancer center, for instance, we’ve recently instituted a patient navigator program, something that’s been around for a long time, and other sites but it’s allowing us to do that, go through that exercise of providing some equitable care by helping people coordinate appointments, find their way to financial resources that might support them, and just to be there as a support in the very difficult time of having a new cancer diagnosis, so I think that’s a well-proven and well-established method for helping people get access to care. 

The other thing I’ll add is that we make decisions, I think as humans, we make decisions through community, and sometimes that’s our partner, sometimes that somebody at the gym, sometimes that’s a co-worker, and there are a lot of really fantastic patient advocacy networks that exist that can help people find this new community, and I think cancer patients share a very unique bond and in a very unique way to communicate with one another because they’re living through this particular diagnosis, and so for in the case of prostate cancer, especially prostate cancer in black men, you have the Prostate Health Education Network, you have Zero Cancer, you have Us TOO, you have the Prostate Cancer Foundation, probably leaving some advocacy groups off and I’m probably gonna get in trouble, but I think that there’s that opportunity to reach out to others and just learn… What did you go through, what worked for you? How can I meet my goals of care through just conversation with other patients and survivors, and I’ll try to leave something for Dr. Grivas to the conversation ’cause clearly I could go on and on. 

Nicole Rochester: 

Dr. Grivas? 

Dr. Grivas: 

I’ll tell you that I am learning every day from Dr. Nyame. He’s fantastic work in this important topic, and I think he covered the answer so well, if I can just add a few more things just to expand on this sorts. And these are things that already he’s doing in his programmatic development in our institution as well. I think one of the important things we have to acknowledge is the issue of systemic racism and implicit bias that I think you referred to Dr. Rochester. I think the more we talk about, the more transparent we are with it, the better because we can think about what are unconscious or subconscious thoughts that we may have, you know this patient doesn’t care about themselves. Why should we go the extra mile to help them? We should go the extra mile to help them because this patient may have less inside of the situation, and they need more resources and as a healthcare system, we should try to earn that patient, right? We should not let that patient go because every patient matters, right? And I think every life matters. I think that’s important. I think overall a systemic issue to discuss. The other thing is getting our sense of the community, and I think the examples of studies we have done in the clinic and other areas that we try to utilize the wisdom and the help of local leaders in those communities for example, underserved populations go to local churches or barber shops or gyms as Dr. Nyame mentioned and collaborate, work with the local leaders and see how we can have a dialogue with the patients there. How can we establish this trust that may be missing, how we can convey that health is important, and prevention is important, and treatment is important, how can we help with financial constraints, right? How can we get patients to the cancer center without them having to worry about how to get there, how can we reach out and have screening in the present county screening in the community, if it’s indicated then access to care telemedicine, and that brings an issue, do the patients have equipment for telemedicine, a computer, we take it for granted, but it may not be. So given those resources, organizing some local centers with this Men’s Health Day, just to get people in a room and educate them, but also learning from them what are the barriers to take it into account, not talk down to them, but learning with them and from them. 

The other thing is research and that will have to do a better job to include an offer in an equitable manor clinical trials to our patients including patients from different races and we are doing, I think, overall, okay, but we are not doing enough, we have to do better in order to provide this opportunities to our patients and the role of patient navigators is great. We can set examples, and we have patients who feel much more comfortable when they have a patient navigator. Sometimes if it happens to be in the same race with a patient then the patient feels more comfortable. They have someone that they can trust or it will be easier to talk to, and I think we should definitely improve and work harder to provide access to research inequitable manor to our patients. The last point I would say is, patient co-pay assistance programs and foundations, I think we can definitely include more resources to our patients, philanthropy, foundation support and state programs in order to give those patients the resource they need again to achieve this holy grail, which is equitable health care. 

Dr. Nicole Rochester: 

I love that you all are focusing on equity, which as we know, is giving every patient what they need in order to achieve their optimal health, and as both of you have stated, that’s very different than equality, and so this concept that we really have to meet our patients where they are, and that some of our patients may be a little bit more than others, and that’s okay, in fact, that’s really what we have to do in order to eliminate these disparities, so I really appreciate both of your thoughts and that’s a great lead in to our next segment, which is really focused on racial and ethnic disparities, and both of you have kind of touched on this a little bit already, so we know that there are as with every other type of cancer and every other disease, there are significant health disparities with BIPOC patients, and so Dr. Nyame, I’d love for you to talk about specifically with prostate cancer, some of the disparities that you see in your practice and in your research, and then what are some things that patients of color can do to protect themselves from these inequities? 

Dr. Nyame: 

This is a very important topic for me, it’s something that I am very passionate about, and as Dr. Grivas alluded to am doing a lot of research on, and I think the statistics are so grey. Black men are 80% more likely to be diagnosed with prostate cancer. So the average man in the United States has a one and nine lifetime risk of being diagnosed prostate cancer, that’s probably one in six or one in seven black men. Black men are twice as likely to die from prostate cancer compared to men of other races and ethnicity in the United States, and a lot of this is driven by the social milieu and factors that we’ve talked about today. What troubles me is when we talk about these statistics, I fear that that in of itself is crippling for some black men. If I have this diagnosis and I’m not gonna do well. Why should I do anything? And I can tell you that the literature and all the research that we do, and it gets refreshed every 10 years or so, someone will do the study and it shows that if we have Black men and men of other races or white men, and we give them the same treatment for the same level of disease, that the outcomes are actually very similar, and a better way to state that for me is if you’re diagnosed early and you get the treatment that you should get irrespective of your race, it seems like outcomes can be quite good. 

And so a lot of what we see with regards to prostate cancer inequities are driven by lower treatment rates and probably an impact of lower quality care. And when I say that, what does that mean? Well, do you get your care at places like the Seattle Cancer Care Alliance or the Cleveland Clinic, or John Hopkins or MD Anderson, where you have providers who are expert and do a lot of prostate cancer care, or are you being seen by someone in the community who I guarantee is an excellent clinician, but doesn’t have the same resources and the same expertise in the sense of being focused on one disease process or one set of cancers, for instance, we are genital urinary cancer specialist, a fancy term for being cancer doctors of the plumbing system, but because that’s all we focus on, we know a lot about the process we know what works, and we know what the standards of care. So I think when you can get the right treatment at the right time, and you can get it from teams that are really specialized in this, that our outcomes are going to not care about what your self-defined races when you check box. 

The problem is, how do we get… How do we close that gap that exists currently that doesn’t allow people to get that care, and I think we’ve talked about rurality, so I think… I grew up in Oklahoma, and I could see that if you are in the sticks in Oklahoma and you’re not near a cancer center, like something down in Dallas, that your care might be impacted, but… Especially if you have to travel a lot and it’s expensive. But we have major US cities like Los Angeles where you may share a zip code with a millionaire but use very different health services, so it’s not always a reflection of how far you have to travel, but it also is factors about how welcoming institutions that provide high quality care can feel for populations like our BIPOC populations who sometimes have been the subject of medical experimentation and lower quality care sometimes because they might not get shuttled to the same services historically, and I think we have a lot to undo to rebuild the trust that is required to have black men not be fearful of seeking care from us, but be trusting. 

Dr. Nicole Rochester: 

Absolutely, and certainly the COVID pandemic has really brought that whole mistrust and distrust to light, so I appreciate you touching on that. We’re going to move to talk about treatment access, and I love how this conversation is flowing because so many of these elements have already been discussed, so we’re gonna talk about treatment access for prostate cancer patients, and we know that sometimes the barriers that patients face, as you mentioned actually limit their access to quality care and to appropriate treatment. So, Dr. Grivas, how can we ensure that a patient’s geographic location doesn’t dictate the quality of care that they receive? 

 Dr. Grivas: 

A very important question for sure, and I think as you point it out, we have tasked upon this before, but I think it is definitely much more to be said and done. More importantly, I think the location has to do with multiple differences in social constructs, right? The location of the distance from a cancer center with expertise is one thing at the time to get to the cancer center is related to that, and also the social support that the patient may have, if for example, a particular treatment, for example, a clinical trial, the requires a weekly visit to the cancer center, is that the feasible thing for the patient who lives miles and miles away in the rural areas of Oklahoma as Dr. Nyame mentioned or somewhere else. Can we design a clinical trial that are more friendly to these scenarios that require less frequent visits. Can we provide, if possible, funding for housing closer to the Cancer Center, and there are examples of cancer centers doing that. They provide temporary housing for the patient to be able be close the cancer center, so they don’t even worry about going back and forth across the state lines sometimes. 

The other thing, of course, is insurance coverage, and again, this can have some relation to location, and it’s something we have to think about, how can we help our patients who have significant copays because of the recommended insurance to that location being supported by foundation or all other funds that the cancer center or the state, or again, other foundations, we have. The other issues about diagnostics and treatments, there has been some interesting discussion about particularly prostate cancer, about access to what we call next generation sequencing, which is a diagnostic test aiming to profile or fingerprint the cancer DNA to look for particular mutations that the cancer may have that may lead to a particular treatment options. 

If, for example, mutation A is present, can we use a drug X that might be relevant in that context of a mutation and a recent data that was presented at ASCO 2021 showed that if you look at those mutations, they’re not very different between, for example, white and Black patients, there are similar types and frequencies of mutations. What is different is access to the test and, of course, access to the [inaudible] of the test. So I think we have to do a better job bringing ourselves to the community, extending our opportunities to the patient to get connected with the healthcare system, and they’ll build bridges to bring the patient and closer to the cancer center offering those tests. Work with patient navigation to help patients understand the significant value of the follow-up, but also provide them with a way that there’s equitable access to diagnostics and treatments. 

 Dr. Nicole Rochester: 

Thank you, thank you so much, Dr. Grivas and you’ve touched on something that I’m going to ask Dr. Nyame to elaborate on which is these fancy tests and these new technologies and things, and what we know is that a lot of times the patient themselves, if they are not aware of these particular tests, then because of all the disparities that we’ve talked about, they may not even be offered to them. And so a question for you, Dr. Nyame, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options and diagnostic options that Dr. Grivas just spoke of? 

Dr. Nyame: 

You know that’s very challenging because Dr. Grivas, and I see this in our clinical practice, we have patients who are very savvy, that’ll come in and say that I’ve heard that there’s a PSM in San Francisco. Do you have it in Seattle? If you don’t have it in Seattle, I’m gonna go to San Francisco. And for every patient I had like that, who might be, Hey, have you read this latest article, I can have someone who has no idea of what’s going on with their diagnosis, and so how we create opportunities to bring those patients and know very little up to somewhere close, maybe not quite to the demanding the PSMA or a fancy scan level, but sophisticated enough to feel empowered in their health decision-making as something where I think we need to do research because we know that certain tools, navigation, advocacy groups can help in that arena, but I think that we need to understand what the tools are that patients want. What’s interesting is when you query patients, which we’ve done in a study and you say, What are the most pressing issues for you in your prostate cancer diagnosis, whether it’s in the localized setting or in the advanced or metastatic setting, the one thing that has resonated over and over again, irrespective of race is I need help making decisions, I need tools that will make it, me more efficient in how I make my decisions. And so I think without punting the answer too much, we need to do better, and I think part of that starts with listening. I do think that providers can be trained to provide that information in a more efficient manner. We do not… We as clinicians, are built into a system where the number of patients we see really correlates with how we get paid, and there’s not a doctor that doesn’t go to work excited to educate and build relationships with patients, that’s not the case, but there is a time crunch and I feel like in situations where there is a bigger gap and knowledge and understanding, we often don’t have enough time and built into our day to have the discussion, so for me, for a lot of my patients who I feel like have a lower understanding of what’s going on with regards to their prostate cancer diagnosis, it’s really important for me to build into our visit the understanding that whatever we don’t cover can be addressed at a later time and that we don’t have to make a decision with that at particular visit. So when I think about this, it’s sort of like your favorite barbershop or your favorite grocery store, your favorite sandwich place, the relationships matter. 

And I think when we talk about empowering patients to be advocates for themselves in their clinical visits, I think there needs to be an understanding from patients that if it doesn’t feel right, that they have options and to take their time in the decision. Prostate cancer, unlike other diseases, that Dr. Grivas and I treat doesn’t have to have the dial turn to 10 or 11 right away, and we need to make a decision because time is extremely sensitive, even in our most aggressive localized settings, which is what I treat, we have the opportunity to take weeks, if not months, to come to a decision. 

Dr. Nicole Rochester: 

Thank you, thank you so much, I appreciate that. And certainly as a physician who’s also a health advocate, I strongly agree with what you said about if the relationship is not working, that there are options, and I know that that may not always be the case depending on where patients live, but I regularly encourage my clients to sometimes you have to look somewhere else, sometimes you have to get a second opinion or maybe even fire your doctor if the relationship is not mutually beneficial, so I appreciate you sharing that. Dr. Grivas, do you have anything to add in terms of how patients can take a proactive approach to their healthcare and how they can build this confidence we’ve been talking about and express their concerns to their medical team? 

Dr. Grivas: 

I think Dr. Nyame covered it so well. I think it’s critically important for all of us to recognize that the finding out the why is probably the key to answer those questions, why there is this distrust, why someone is not paying attention so her own health because they have to try to make ends meet and keep family fed during the day time, and they don’t have time to think about their own health as Dr. Nyame mentioned before, at the same time, empowering the patient that they are the center of this relationship. 

Why doesn’t Dr. Nyame go to the clinic in the morning is because of patients, so our training is patient-centered and our practice is patient-centered and our research is patient-centered, so the patient should feel that right from the door, that this is a service to them. And we’re doing what we’re doing to help their life being longer, longer survival, as we call it, or better, better quality of life, and listening to the patient’s needs is important because of the time crunch that Dr. Nyame mentioned before, I think many of us, probably all of us are within situations where we don’t have enough time to listen advocate, what the person have to say, that’s why I think it’s important to have opportunities for separate visits and utilize better other mechanisms, exact mechanisms, patient navigation I think it’s a critical part of our care, social workers, case managers, financial counselors, nutritionist, genetic counselors, looking at genetics in for the disposition to cancer which is much more common than we think occurrences sometimes we be higher in some certain populations. Having this service available to patients, can help a lot because they will give them knowledge, and knowledge is power by itself, so give them the center, we’re here for them. Why they’re here, it’s because we want to help them and giving them also resources, they need to get now let’s information, when they feel they have more knowledge and they feel that they have control, they can communicate back and give feedback of how we can do better and also, what are the priorities of their needs, so we can address those, what matters to the patient, and this can apply to base and care, and also is what questions we’re asking? Research should be defined by patient priority, so all of those factors should be a dialogue with a patient, I think advocacy groups can be a great liaison to help us disseminate this concept and help again, empowering the patients. I struggle believe that explaining the why and giving knowledge, the data points in a simple and lay manner, can patients think being more in control. 

 
Dr. Nicole Rochester: 

Absolutely, thank you, both of you. I love the patient-centered focus, that is something that admittedly, we’ve gotten away from that to some degree in medicine because of the time crunches that both of you have mentioned, and I love that you said knowledge is power. So as we close, I’d love for each of you to share maybe a couple of key questions that patients, our care partners facing prostate cancer should ask of their treatment team to ensure that they’re receiving appropriate care. 

So we’ll start with you, Nyame. Any key questions that patients should be asking their care team when they seek treatment or diagnosis of prostate cancer. 

Absolutely, I think that there’s a long list. Actually, I’ll tell you, my new prostate cancer diagnosis visits are usually my longest because there’s a lot to consider. I do think depending on what you’re having done and what you’re being considered for, so let’s say in the localized setting, prostate cancer is confined to the prostate, and you’re thinking about treatment like a surgery or radiation therapy, you really want to know what that center and what that provider’s experience is because we have a lot of supporting evidence that the more people doing this… No one’s going to be surprised by what I’m about to say, but the more that someone does is the better they’re gonna be at it. Okay, and so making sure your team has a good experience with what you’re seeking to have done is important, and I think it’s well within your rights as a patient to understand that, so I think advocate for that. Secondly, I think basic questions, just to understand the relationship, I think… I like it when patients wanna know a little bit about me because I’m gonna be… They’re gonna be in my hands, and so again, the importance of that relationship building and your visit is crucial. 

Lastly, I think when you come to the visit, have a list of questions based off of what you’ve researched and write them down, I find my most sophisticated patients or crossing off questions as I’m talking, ’cause they came prepared and so that preparation… The act of doing a little bit of reading, there are a lot of resources, the Prostate Cancer Foundation, for instance, has a very nice patient guide that’s written by patients and language that’s really digestible and edited by experts, and so going through that and coming with your list of questions, I think is a really important thing for your visit, and those are just a few things I can think of that can lead to a meaningful clinic visit and exchange. 

 
Dr. Nicole Rochester: 

Excellent, I’m a huge fan of questions and being prepared for visits, what about you, Dr. Grivas are there one or two key questions that you feel patients or their care partners should ask? 

Dr. Grivas: 

Great answers by Dr. Nyame, I totally agree. I think started with the basics, What this diagnosis means for me, what is the current extent of the cancer, we call the states, and what is the outlook, what is the overall prognosis or at least estimate of the outcome, that’s a reasonable question to ask and again some places more detail, some others may not, and it’s important for us also to ask the base and what they want to know, how much they want to know, I would take in things of them, they want to know the entirety of the information because it makes… Help them make decisions. The other, I think it’s important point, what are the treatment options and what is the intent of the treatment, what are we trying to achieve by giving treatment, are we trying to cure, eradicate or eliminate the culture, are we to prolong life, are we trying to improve quality of life or are we just trying control the cancer, so what are the goals of the treatment and what are the metrics of success, so what will be a successful outcome of that treatment? How do we measure that? And I think it’s also important. 

Two more points, I would if I may. I think, again, going back to the importance of genetic counseling even more in prostate cancer, I think we recognize the importance in the aspect of patient treatment because some treatment options may depend on finding mutations. But also the importance of the family, how much can prevent cancers in the brother family, close and extended family, if we find the mutation, can we set this mutation for other family members and do screening to prevent cancer prevention is ideal if we can do that and I think that’s a good discussion, so the patient can come to the visit if possible, by doing some homework about the family history. It’s hard for of us now, what’s happening in that chasm, right? But we do have the time to be informed of the importance of the question, this can help and expedite in our resources like to genetic counseling. And the last points, research, I want to again make the point, we should all do a better job to offer innovative clinical trials to patients across races, and it should be a very important point again equitable healthcare. And the patient should ask are clinical trials an option for me and do I have a clinical trial option? And I think it’s a great question, and hopefully this can help the patient get to integrative treatment, but also help the field. 

The research would get important answers, and the important answers can be for all the community and the specific populations, if we do trials, clinical trials with only the white patients, do we have the answer for the black patients, or we have the answer for both and other races and ethnicities as well. 

Dr. Nyame: 

And I do wanna take this opportunity to add one more thing because Dr. Grivas was talked about what does your treatment mean for you, and in this discussion about prostate cancer, we cannot talk about what questions do you bring without mentioning the impact, quality of life of our treatments, and I think that sometimes this is the elephant in the room that leads to the decision to not pursue treatment, and so I want to take this opportunity as the urologist to say, This is the time to talk about what treatment is gonna do for sexual function. This is the time to talk about what treatment means for your urinary symptoms and quality of life, a good and healthy discussion around these things need to happen during your visit, because I think sometimes what patients expect to have happen with treatment and reality don’t match. And you have an expert in front of you that can really give you some input as to what to expect, and in a similar vein, when you meet with survivors, these are some of the things that I know patients tell me they’re worried about, and these are people who are living it, that can give you really valuable information on that piece of quality of life, and I hope that those conversations can help us close that treatment disparity that we see between black men and white men with prostate cancer. 

 Dr. Nicole Rochester: 

Such wonderful points. This has been an amazing conversation. Thank you so much, Dr. Nyame and thank you Dr. Grivas for just illuminating so many important issues, just to briefly summarize, we’ve talked about the disparities that exist in prostate cancer, diagnosis and treatment based on geographic location, based on finances, insurance that is access and… Yes, even race and ethnicity, and you all have done a wonderful job providing solutions, we’ve talked about the importance of advocating for yourself and your loved ones, the importance of being educated and doing some research, coming to those visits with your questions, making sure that you form a relationship with your treating physicians and sometimes perhaps seeking someone else, if that’s not possible, so just… So many gems, and I just wanna thank both of you for spending this time with us today, and I wanna thank you all for tuning in to this Patient Empowerment Network program. I’m Dr. Nicole Rochester, and thank you for joining us. 

Dr. Grivas: 

Thank you. 

What Steps Can Breast Cancer Patients Take To Be More Proactive?

What Steps Can Breast Cancer Patients Take To Be More Proactive? from Patient Empowerment Network on Vimeo.

What steps can breast cancer patients take to be more proactive in their care? When is it appropriate to voice concerns? Dr. Regina Hampton offers advice for patients and loved ones how to work towards achieving optimal care.

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Transcript:

Dr. Nicole Rochester: 

Are there some other practices or key steps that patients can take so that they have a proactive approach in their healthcare and that they can feel more confident in voicing some of these concerns when they’re communicating with their healthcare team? 

Dr. Regina Hampton: 

I think it’s important to have a support person. And that could be a family member, it could be a neighbor, it could be your best friend. Doesn’t always have to be family, sometimes it’s better to have somebody who’s not family, because sometimes a family, they get you know they get emotionally involved and we get that, but I think it’s important to have another pair of ears because especially when you get a new diagnosis, you’re not going to hear everything, and I know patients. The second somebody says, cancer, breast cancer, pancreatic cancer, they just shut down. That’s it. They’re not going to hear. You could tell them, I have a million dollars for you, they’re not hearing you, they’re not going to follow the directions to go get that million dollars because they just have shut down, and even at that second visit, they still are just sort of…I call it the whomp, whomp, whomp. They see my mouth moving, but they’re not really hearing the words, but if they have another support person who can be there to record the conversation, who can take notes, even in the era of telemedicine, somebody can dial in to listen. I’ve been doing family meetings and people have been on the West Coast, or somebody couldn’t get off the work, but there was somebody there who could hear that information, I think that’s so important, and especially as we get more seasoned, Mom and Dad, sometimes they are a little in denial on the information that they can take in, but so important to be there in some form, and with telemedicine, it makes it quite easy to get another pair of ears in the room. 

Absolutely, you are speaking my language, Dr. Hampton, I’m telling you, because the other thing that I always recommend is for patients to have a buddy, and like you said, that may be a family member, it may be a best friend, it may be someone in your church, but I think the studies  say that something somewhere around 30 percent to 40 percent is all that we retain when we go to the doctor’s office, and so like you said, especially if you’re getting bad news, a lot of that information goes out of your brain, and so it’s so important to have a back-up person and that person can sit and take notes, and sometimes they can even remind you of some of the questions that you may have had or some of your concerns, I really, really appreciate you bringing that up.  

 I think it’s also important to take a deep breath, I find people get a cancer diagnosis and they want to just rush through everything. Well, in most cases, cancer doesn’t spread that fast, but there are a lot of decisions to make, and you really should take that time to hear all the options, may need to get a second or third opinion so that you really can make good decisions, you can’t make good decisions if you’re fearful, just can’t do it.  

Which Prostate Cancer Treatment Is Right for You? What You Need to Know

Which Prostate Cancer Treatment Is Right for You? What You Need to Know from Patient Empowerment Network on Vimeo

What do you need to know before deciding which treatment is best for YOUR prostate cancer? Dr. Maha Hussain discusses the role of key tests in choosing therapy, including biomarker testing, provides tips for partnering with your care team and reviews recent research news.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

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Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’re going to discuss how to access the most personalized prostate cancer therapy for your individual disease and why it’s essential to insist on key testing. Before we meet our guest, let’s review a few important details. 

The reminder email you received about this program contains a link to program materials. If you haven’t already, click on that link to access information to follow along during this webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars.  

Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. 

All right, let’s meet our guest today. Joining me is Dr. Maha Hussain. Dr. Hussain, would you please introduce yourself? 

Dr. Hussain:

Sure. Thank you, Katherine. 

It’s my pleasure to join you. And to the audience, nice to meet you all virtually. My name is Maha Hussain. I am a genitourinary medical oncologist with a focus on prostate cancer and bladder cancer. And I am a professor at Northwestern University Feinberg School of Medicine, Department of Medicine, and endowed professor there. And I also serve as the deputy director for the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. 

Katherine:

Wonderful. Thank you so much for taking time out of your busy schedule to join us today. 

Dr. Hussain:

My pleasure. 

Katherine:

I’d like to start by asking about developments in prostate cancer research and treatment. Experts recently gathered at the annual American Society of Clinical Oncology meeting, also known as ASCO, to share their research. 

So, what were the highlights from that meeting that you feel patients should know about? 

Dr. Hussain:

I think probably perhaps I can focus on two major – what I would consider major highlights, and those were the results from two randomized Phase III clinical trials. 

One of the trials is called the VISION trial. And the VISION trial was a Phase III randomized trial evaluating lutetium-PSMA-617 treatment in patients with metastatic castration-resistant prostate cancer. And the delightful thing about this study is that that study was positive. The PSMA story has been really going on for a few years now. And there’s the PSMA for purposes of scans, imaging, to assess the cancer. And the FDA just approved a PSMA PET imaging this year. 

I think it was in May when it was approved. And that would help better define if the cancer is spread or not, and it help with the decision regarding treatment. But the second part is treatment purposes, so identifying the cancer location and trying to attack it with a specific sort of targeted attack to the tumor is really important. 

And so, the FDA is currently looking at this particular agent. And I am hopeful that we will hear soon from the FDA, hopefully before the end of the year, and maybe – who knows? – maybe by summer, middle summer or end of summer. Because I do think that would be a major benchmark in there. And so, that’s one thing. 

The other clinical trial that I thought was interesting from a data perspective – and for disclosure, I am one of the investigators on this study. And this was an intergroup Southwest Oncology, or SWOG, sponsored clinical trial. So, it’s a federal study that Dr. Aggarwal presented. And this was a study that was aiming at maximizing, again, the anti-tumor therapy with the use of a drug which I call is the younger brother of abiraterone. 

So, abiraterone is a drug that is FDA-approved and has been around for several years right now for both castration-resistant prostate cancer and certainly hormone-sensitive metastatic disease. And so, TAK 700 (Orteronel) is a younger brother, I call it, of abiraterone. And one of the potential advantageous when this trial was designed was the fact that you don’t need to use prednisone. And the trial was completed. It was a national clinical trial. And what was interesting is that there is certainly what appears to be a potential benefit, but not in terms of the conclusive based on the way the study was designed.

Having said that, what I thought was remarkable is that patients who basically were only on the control arm was LHRH therapy, so this could’ve been like Lupron, Zoladex, or something like that plus bicalutamide, which is what we call combined androgen deprivation. And that was sort of like the strongest control arm we could do at the time when the trial was designed. 

Remarkably, the patients who were on that arm had a median survival of basically 70 months. That’s the median. That’s the bell-shaped curve with the number in the middle. Seventy months is probably the longest ever in any other randomized trials in this disease space, in the hormone sensitive space. So, that tells us is that men are living longer with prostate cancer, even though it’s metastatic disease; and, yes, it’s not necessarily curable, but men are living longer. And it’s a function of all of the better treatments that are supportive care and everything that was going on.  

And so, the control arm, as I mentioned, was the 70.2 months. The actual experimental arm was about 81.1 months. And again, I don’t know where things will go from this. Obviously, I’m not the sponsor not the FDA. But the point here is that men are living longer, and so wellness and health become even more so important than we ever did. And as I tell my patients, every day you’ll live longer. The odds of living longer is there because of better treatments coming on. 

So, to me – not to take too much time from the interview – to me, these were the two highlights: new, approved – I’m sorry, new treatment that I’m hoping will be FDA-approved and, obviously, the fact that men are living longer.  

Katherine:

How can patients keep up to date on the research that’s going on? 

Dr. Hussain:

I’m a bit biased, obviously. I’m a member of ASCO. 

And what I would recommend to my patients is to look at the cancer.net website. The cancer.net is a website that is an ASCO-generated website specifically for patients and families to review. It is vetted. The committees are not run just by physicians, oncologists, a multidisciplinary team, but also patient representative. So, the lingo and the presentation are lay-friendly, I call it, there. 

The other part I would say, the NCI website, and the American Cancer Society, the American Urological Association. I would say there’s a lot of stuff on the media. The difficulty is vetting what is sort of fake, what is not so accurate, or bias versus there. I also think that the NCCN has also some resources for patients. 

And one thing I always tell patients: explore, look, but make sure that you talk to your doctor about the meanings of everything because sometimes it can be not – it could be misleading, I should say, or maybe not very clear on what the implications are. 

Katherine:

Right. One thing that’s a topic on the mind of many people right now is COVID. 

Dr. Hussain:

Yeah. 

Katherine:

Is the COVID vaccination safe and effective for prostate cancer patients? 

Dr. Hussain:

The answer is yes and yes. So, I have to say, by default, I deal mostly with older men. Age brings in other comorbidities. And certainly, while I see all kinds of shades of gray in terms of the disease extent, going all the way from newly diagnosed all the way to end-stage disease, the bulk of the patients I end up seeing tend to have more systemic disease and have other issues going on. And I have to say, surprisingly, less than a handful of my patients had the infection. 

Only one required hospitalization with supportive measure, but not even needed incubation; however, he needed a lot of CPAP and other respiratory support. I’m not aware of any of my patients or my colleague’s patients who deal with prostate cancer that have died from COVID. So, I would say that’s the good news and that we have not seen a big hit in the population that I deal with. 

I also know that I would say 99.9 percent of my patients have opted to be vaccinated, and they have tolerated the vaccine just fine. There’s only one case, which I actually even saw just this week, who had been vaccinated but have a very, very severe end-stage disease with significantly compromised bone morrow, who got infected but hospitalized for a few days and is recovering. 

And so, I would say just by the pool of patients I see, my answers are yes and yes. 

Katherine:

Very good. Thank you. 

Dr. Hussain:

And I would encourage all the audience to go get vaccinated. I myself am vaccinated. And I’ve advised all my family members to be vaccinated, just to clarify that too. 

Katherine:

Good. Good to know. Dr. Hussain, we’re going to spend most of this conversation talking about advanced prostate cancer. But before we move on, would you give us a brief overview of the stages of prostate cancer? 

Dr. Hussain:

Absolutely. So, with any cancer, we count sort of like four stages. But I would say in prostate cancer the biggest thing is when the cancer is newly diagnosed, which could be confined to the prostate or locally advanced, meaning the cancer has gotten outside the capsule of the prostate but still within that pelvic region. 

There is the group of patients who have pelvic lymph nodes at time of diagnosis. And of course, that is the patients who have systemic disease, which would be technically stage four. Now, the systemic disease implies any abnormality that is found on scans that is beyond the public region. So, that could be lymph nodes in the back of the belly. That could be thoracic lymph nodes. That could be neck nodes. That could be lung lesions, of course, or bone, or liver. 

Now, the most common area where the cancer goes to is really – when we talk about metastatic disease – is the bone. And then lymph is another area where the cancer goes to. Prostate cancer that is confined to the prostate is curable in the vast majority of patients. There is a category of men who undergo surgery or radiation, and then their PSA begins to go up afterwards. 

And this is what we call biochemical relapse. And this is a situation where we know that, in all likelihood obviously, especially of the patients who have had their prostate out, that the cancer has spread. With the current imagine, a good chunk of times, we do not find anything because we’re able to pick up PSA that goes from undetectable to 0.2 to 0.3, but there’s not enough cancer to show up on the scans. We’re hoping, obviously, the better scans, the PET Axumin scan, the PSMA scans are going to help us to identify sites of metastases. 

But this is a group of men where if there is no cancer visible and the only thing we’re dealing with is PSA that’s going up, if they’ve had surgery, then there’s room for what we call salvage therapy with radiation and hormonal treatment. The case is a bit different if there’s only just the prostate – if radiation was given previously. And of course, we talked about metastatic disease. 

Katherine:

Yeah. Once someone has been diagnosed, what tests are used to help understand the aggressiveness of their disease and their overall prognosis? 

Dr. Hussain:

Well, I think there is different basic things, as in, what was the extent of the cancer? How did it look under the microscope? And what is the PSA levels? So, these are the general things. There are different sort of genomic panels that the urologist will use to kind of decipher and other things to kind of help with figuring out aggressiveness and things like that. What I would say is this, is a patient who is diagnosed and has a cancer, and at a minimum has what we consider a Gleason 7 prostate cancer – so, that’s the scoring system that is done with the original Gleason score, or the new patterns where it’s talking about intermediate risk to high risk – to me, this is a cancer that needs to be treated. 

And again, that’s all to do with if a person has other comorbidities, they have some other terminal condition that’s a separate story. But talking generically, that would be when we would recommend. And these are the patients that are generally not seen by the medical oncologist. They’re seen by the urologist, and then they can refer them to radiation oncology also for consultation. 

Katherine:

Now that we understand how test results can help inform a patient’s cancer and how it may behave. Let’s discuss how they can affect treatment options for men with advanced disease. First, let’s do a brief review of the treatment types currently available. There’s hormone therapy, right. What else? 

Dr. Hussain:

Perhaps, it’s simpler if we focus on advanced disease, specifically metastatic disease. 

So, if that’s the deal, then the backbone of treatment is hormone treatment. And it really is. We call it hormone, but technically it’s an anti-hormone. What we’re trying to do is shut down the hormonal pathway that stimulate the testes, which is the factory that makes testosterone. So, we are looking at shutting down testosterone production from the testes in order to starve the cancer. 

Now, the male hormone is produced predominantly – somewhere about 95 percent of it is made by the testes, and then there are about 5 percent-ish that comes from other sources. These are, again, male hormones like the adrenal gland and so on. And there was a while ago some research – I want to say from the MD Anderson crowd, but this is two years ago – that suggested also that the tumor may start to make sort of in-house production of male hormone to support itself. 

Now, having said that, again, testes continue to be the source of the majority of the male hormone. And so, historically, the first data that showed benefit was actually by surgically removing the testes, which is what we call orchiectomy or bilateral orchiectomy. And then medications began hitting the market and were evaluated in the late ’80s and then 1990s, beginning with Lupron – which by the way, in the ’80s, it was an injection that the patient had to give themselves every day, which is remarkable. 

But even then, there is a personal preference by patients to go and take injections as opposed to go through surgery with orchiectomy. But still, I would say for some patients it may be an option until it ought to be discussed as an option. Then what we know is this, is because of the potential other sources for the male hormone, the concept of what we call combined androgen depravation was being evaluated. 

And again, this goes back to the ’80s when the first drug was flutamide and then bicalutamide, and there are other drugs that became. And they kind of added a sprinkle, I call it, to survival. But it wasn’t dramatic, huge differences in survival. And so, generally, while we used it, everybody believed in using it. Moving forward, the drugs like abiraterone, enzalutamide, apalutamide are the three hormonal drugs that have demonstrated conclusively really an advantage in terms of prolonging life when added to the Lupron. 

So, what I tell my patients is that, when it comes to hormone treatment there is really no way around it. You can delay it. Some people are exploring for some patients who don’t have a lot of cancer, maybe a couple of areas, maybe just do targeted radiation and then leave the person alone to buy them some treatment-free time. 

And, to me, this is where the discussion that has to happen with the patient. What is the objective? Is the objective to kind of be ahead of the game and maximally treat the cancer with the hope of prolonging life? Or is the objective to delay treatment? And I would tell you that, with these types of conversation, nine out of 10 or 9.5 out of 10 men opt for moving aggressively up front with management. So, that’s that. 

Now, the one thing I should point out, one of the trials that also was a landmark trial in this disease was the study CHAARTED, which was an intergroup clinical trial at the time it was designed, led by ECOG, and the PI was Dr. Chris Sweeney. I was part of the team that worked on the design also of the study. 

And that was a trial that looked at adding docetaxel to hormone therapy, versus hormone therapy alone, to try to see if it adds something. Historically, all the chemotherapies prior to that that were added to hormone treatment for patients with newly diagnosed metastatic disease had not delivered. And docetaxel did. 

However, one thing I should point out, based on that trial – and I don’t want to go into too much details for the sake of time – the patients that seemed to be benefiting were the patients that had more aggressive, more disease in their system. And so, liver metastases, lung metastases spread in the bone at different areas, not like few isolated areas in the spine or the pelvis, but much more than that. 

And so, for the patients who have what we call high-volume prostate cancer based on scans – and I’m happy to explain what that means if it’s needed – these are the patients that I would offer either the docetaxel plus hormone treatment, which is the injection, or the injection plus the hormonal pills that I mentioned earlier. 

Katherine:

What about targeted therapy? How is that used? 

Dr. Hussain:

Okay. So, let’s begin with the molecularly targeted therapy. So, as we speak right now, for patients who have newly diagnosed metastatic disease that we call hormone sensitive, molecularly targeted therapy is not standard of care. So, I would encourage patients who may qualify for clinical trial to be involved in those. The flipside is – we can talk about it – is that molecularly targeted therapies, specifically with PARP inhibitors have pretty much entered in the space of prostate cancer with a couple of drugs that were FDA-approved. 

The other way of targeted treatment, which would be what we refer to targeted radiation, this would be a different story. This is not systemic treatment. This is a local treatment. And what is done is basically if patients do not have a lot of cancer in their body based on scans, and only certain areas, and they are starting systemic therapy, they can certainly consult with a radiation oncologist to target radiation to areas that are visible on scan. So, if somebody has a couple of, let’s say, pelvic bone lesions, maybe a lymph node, and they are already starting systemic therapy, they can consult with a radiation oncologist focal radiation. And so, that would be the general scheme. 

Katherine:

Many patients are confused about the role of genetics and biomarker testing in prostate cancer care. 

For people who haven’t heard of some of these terms before, let’s go into the definitions. So, what is genomic or biomarker testing, first of all?  

Dr. Hussain: So, I think there’s one thing. Maybe I can explain because the wording can be confusing. So, there is the genetics, and there is the genomics. The genetics would be what we inherit from our families. So, this would be present in our body. The genomics testing would be to look for what the structure of the genes of the cancer itself, cancer cells itself. Now, that doesn’t mean that this was inherited. It’s just that this is a renegade, and it evolved. And that is what is going to show up. 

The reason these two are important, both of them have implications potentially for treatment or perhaps clinical trials. And again, with the PARP inhibitors, the BRCA-like genes will have implications for treatment sort of for resistance cancers. 

With regard to the genetics, the implications are for, again, inheritance of family and potential risk for blood relatives. Now, there are panels that are FDA-approved for the purpose of genetic testing. And the requirement or the indications right now, anybody who presents with metastatic disease or an aggressive disease and diagnosis, the recommendation is to proceed with the genetic testing, certainly counseling and testing, because there are some people who prefer not to be tested. And that’s something else. 

What I tell my patients is this, even if the testing is done and it was negative for inherited genes that might put the patient family at potential higher risk, the fact that a person has prostate cancer by default puts potential, adds risks to family, to blood relatives. 

And the risks aren’t just for the males with regard to prostate cancer, but certainly breast cancer, ovarian cancer, pancreatic cancer potentially, and things of that sort. So, this is where I think a patient needs to be discussing with their doctors. And certainly, there are many centers that have genetics counselor, and so that’s where I generally refer my patients to. I counsel them myself, and then refer them also for more discussions with genetics counselor. 

Katherine:

What exactly are genetic mutations? And how do they impact a treatment path? 

Dr. Hussain:

Well, I think, again, it’s the changes that happens in specific genes that may promote the aggressiveness of a cancer. And so, the BRCA gene is one of the oldest genes that have been identified in breast cancer. And essentially, the body regulates itself. 

And when cancer cells come up and they sort of – the body no longer sustains that regulation, the genetic regulation in those cancer cells. Those cancer cells will behave the way they want to. That means that they’re going to grow faster. That means they could be resistant to treatment and things like that. And so, that’s what we check for, these alterations. And there are certain medications that would allow – and again, in prostate cancer, it’s not a lot. It’s just, as I said, right now the only things that are proven is the PARP inhibitors. This is essentially to kinda gang over the cancer cell, preventing from allowing it to repair itself so it can continue to grow. 

Katherine:

Some patients may not know if they’ve received these important tests. So, for patients that aren’t all that sure, what key questions should they be asking their physician or their specialist? 

Dr. Hussain:

So, I would say when it comes to the genetics testing, I believe a patient has to consent. 

Because again, we live in the U.S., and this is a private matter for the patient. So, this generally has to be the case. Otherwise, depending on the institution, sometimes some tests will require for the overall testing for looking for any genetic alterations, general tumor alternation. Different centers have different things. But the patient should ask and say to their doctor, “Have my cancer genes been tested? Have my genes been tested? And if they have, what are the results?” Because we generally share with the patients once it’s been done. 

The other things I should point out, some of the good things that have happened recently. Up until recently, when it comes to the tumor genomic testing, tissue was required. Nowadays, the FDA has approved blood tests that several companies now run that can actually collect blood sample and basically test it for circulating tumor cell genes there. 

Now, no testing is 100 percent perfect. But in situations like patients with prostate cancer who may not have recent tissue or adequate tissue for testing, certainly doing the blood test to verify if there is anything reflective of the genes of the cancer, and that may allow for potential actionable-type treatments. Again, up until now, this is more going to apply for potential clinical trials or resistant metastatic disease. 

Katherine:

Are there other important factors to consider, like a patient’s age, that can help them access the best treatment for their prostate cancer? 

Dr. Hussain:

Yes. And I think that age is one factor. What I say and what I tell my fellows, age is to be respected, but used to discriminate in terms of management. 

 We all age. And certainly, the body reserve is not the same. And so, that’s why I would say that has to be respected. But it doesn’t mean that we cannot treat patients. 

And I’ll tell you, it’s interesting. There are times where you have – I have a gentleman who used to run seven miles a day. He was 87 years old. This was in my days when I used to be in Ann Arbor at University of Michigan. And the gentleman came to me, and he said, “Dr. Hussain, I don’t feel good.” And I said, “Sir, why? What has happened?” “I can’t run like I did before.” And I said, “You’re not running?” “No, I am running. I’m just not able to do seven miles a day. I can do only four miles a day.” I’m like, whoa, that’s about 100% more than I do. 

Now, again, I’m bringing this as an extreme example. But for some of the oral agents, like the Olaparib trial, there were men in there literally late-’80s, early-’90s that were included in the clinical trials. Same thing goes for several of the other trials. 

I do think that functionality is important. So, if somebody comes to you so sick they are in a wheelchair, you really have to be very careful. And again, I’m just using kind of extremes. And so, you have to be careful by what you are able to do. And any time the doctor thinks the odds are going to be more harm than good, this is really where absolutely a situation where the physician needs to be careful about it, and the patient needs to understand it also. At the end of the day, it’s a shared decision. 

Katherine:

Before we close, Dr. Hussain, how do you feel about the future or prostate cancer research, and what would you like patients to know? 

Dr. Hussain:

First, let me say that I would love for the patients to know that they are a partner, a most critical partner in the process.  

That we need to continue the research and investment in research. It is research that will end up curing cancer. Wishful thinking will not do it. And patient volunteering, which I think is remarkable across all cancers. The business I’m in, the way that drug discovery and evolution often happen because patients volunteered. And without testing these new treatments and combinations, we will not be able to get better results.  

And I will tell you that, when I started my training, the median survival for patients with resistant prostate cancer was on the magnitude of about nine months. Now it is three years-plus. Now, you could argue, well, that’s not huge. But that is a huge change because, again, we’re picking up the cancers much earlier. And the patients who had, as I mentioned, metastatic disease, again, the longevity then at the time I was in training, but even afterwards, was give and take in the three years. And now we’re talking six-plus years. 

And so, there’s been tremendous progress. And really partnership with the patients and their families and supportive others is very critical, and investment in research. So, yes, advocate constantly for more investment in research. 

Katherine:

All sounds very promising, Dr. Hussain. Thank you so much for taking the time to join us today. 

Dr. Hussain:

My pleasure. And be well, all of you.  

Katherine:

Thank you. And thank you to all of our partners. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about prostate cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us. 

Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns

Empowered Patient and Care Partner Ask the Expert: Addressing COVID-19 Concerns from Patient Empowerment Network on Vimeo.

With COVID-19 infection and vaccine concerns, what are the key points for cancer patients and care partners to know? Expert Dr. Shaji Kumar from Mayo Clinic shares valuable information about protective measures against COVID-19 infection, vaccine side effects and effectiveness, working toward herd immunity, and cancer research benefits that have emerged from the pandemic. 

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Transcript:

Mary Leer:

My name is Mary Leer. I’m the Breast Cancer Network Manager.

Jeff Bushnell:

And I’m Jeff Bushnell, the MPN Network Manager at the Patient Empowerment Network. I’m a caregiver.

Dr. Shaji Kumar: I

’m Shaji Kumar, a hematologist at Mayo Clinic.

Mary Leer:

Jeff and I are proud to be part of a strong team of compassionate volunteers, helping health communities adapt to the realities of living with a serious illness, living with cancer during a pandemic certainly presents another layer of challenges. So, Jeff and I will drill down to ask the important questions from the community. For this production, Empowered Patient and Care Partner Ask the Expert, we are very lucky to be joined by noted expert, Dr. Shaji Kumar, a consultant in the division of hematology at Mayo Clinic. Thank you for taking the time to join us, Dr. Kumar.

Dr. Shaji Kumar:

Thank you for having me, Mary.

Mary Leer:

Let’s start with the top of mind questions for so many of us right now, what should every patient and care partner facing a cancer diagnosis know during the pandemic?

Dr. Shaji Kumar:

I think it’s a challenging time for everyone, and it’s obviously more challenging for patients dealing with cancer at the same time, thankfully, we have a vaccine at hand that will certainly make the situation a lot better, but I think from a cancer standpoint, I think what we need to keep in mind all the precautions we talk about in terms  of social distancing, masking, hand washing and all those measures apply equally to everyone, even more so to patients with cancer. And the reason why we say that it’s even more important for several reasons, one, and we continue to learn more about the pandemic and its impact on cancer, one thing that has become clear is that patients with underlying conditions including cancer are to other folks were more affected by the infection, more likely to have more severe interactions and poorer outcomes. Now, patients with cancer appear to be at a higher risk of getting the infection and then they get the infection having a more serious disease. Now, it’s hard to know how much of this is also related to the fact that patients with cancer often have to go into the hospital or the clinic, and hence are more likely to get exposed to the infection than someone who is able to just stay at home.

So that’s one thing. And second, we know that the ongoing treatment for cancer definitely suppresses the immune system, and hence places people at a higher risk of the infection itself. Now, even patients who have their past history of cancer, this appears to be some increased risk, even though this is a little bit, unclear how much more it impacts those individuals. But I think the bottom line is keep the awareness that you might be at a higher risk of getting the infection, more serious infection, and the need to take those precautionary measures in a more strict fashion, and getting the vaccination when you can get it is all things that one needs to keep in mind.

Jeff Bushnell:

Well, that’s wonderful, Dr. Kumar, you mentioned the vaccinations, I am a strong proponent of that, I happen to have been involved in the Moderna vaccine trial, which is and still enrolled, they’re doing the follow-up. I guess they’re checking the last time I was in last week, they took 8 vials of blood, I think they’re checking to see whether I have the antibodies and how long it will last, but I was very happy with the way it was conducted, they were very forthcoming with information.

It was very interesting. And out here in San Diego, where I am, we have done pretty well as a county in vaccinating people and Summer got the vaccine as well with myelofibrosis and she feels a lot better. But for cancer patients who have tested positive for COVID, are there notable consistencies amongst that group of people, and have we learned anything from those patients yet about maybe their chances of getting it more, or their reaction to it? That kind of thing.

Dr. Shaji Kumar:

We know that there’s a wide spectrum of reaction to the vaccine. The majority of the people would not notice any symptoms related to that except for some pain at the injection site.  Not there are some folks, number of people who might have more or just myalgia, muscle pains, just feeling fatigue, some low-grade fevers, just feeling blah for 24-48 hours, and it seems to be not too uncommon. The reactions to the vaccine in terms of the side effects or the symptoms, there doesn’t appear to be much of a difference between cancer patients and normal individuals. Now, in terms of the efficacy of vaccination, you just mentioned Jeff, about you being checked for the antibodies, obviously, that is something that we hope will happen to all individuals who get the vaccine, but we know that is not going to be the case, there’s going to be a wide variation in terms of how strong an immune response one might develop against vaccines. Now We know from, not necessarily the COVID vaccine, but the vaccinations that have been used in the past, whether it be flu vaccines or pneumococcal vaccines, that we all get patients with cancer or patients going through treatment for cancer that can suppress the immune system, tend to have a lower response. But again, that varies quite widely from patient to patient now, there are some vaccines where we can clearly look at the antibody response and say, “Oh, this is not adequate, and we need to maybe give an extra shot.”

We just don’t have that information for COVID vaccines yet. So the way I would look at it is, even though the response to the back in a given person might be less than what we eventually would identify to be optimal, it’s likely to be better than not having to see the vaccine, so I would encourage obviously, everybody to get the vaccine. Now, what about someone who has already had an infection, what would be the response? Should we vaccinate those people? We certainly should. Again, we don’t know the immunity from a natural infection, how long would that last? That is still something that is unknown, and the vaccination dose is likely to make the responses more relevant and more durable, so I would recommend the vaccines for everyone. We don’t think one vaccine is any different from another in terms of your underlying cancer or lack thereof. So in terms of assessing for the antibodies, there is no clear guideline in terms of what one should anticipate from  the vaccine, so there is really no way to say, check the antibody, and they can go ahead and get one more dose or you’re fully vaccinated. So I think the bottom line is, get the vaccine, you don’t need to necessarily test for a response, and then we continue with the usual measures for prevention.

Jeff Bushnell:

And so what would you tell the… I guess that’s pretty much the answer to the next question I had. What would you tell the patients who are in active treatment and who planned to get the vaccine just continue as normal after they get it, with all the appropriate precautions?

Dr. Shaji Kumar:

Yeah, no, I think there’s one other important aspect, Jeff, to that question you just raised, which is, what is the right timing to get vaccinated, the vaccine, and that is a question that often comes up. So patients who are not getting active treatment, there is obviously no concern whenever the name comes up, go ahead and get the vaccine. And the second is what if someone is actually getting active treatment for their cancer, is there any role in terms of trying to find the vaccination, with respect to the doses of the medications and for most of the treatment we are using for cancer, there are no clear guidelines in terms of the when they can get the vaccine, that having several guidelines that have been put out by different organizations. The bottom line is, if there is an ability to space out or give sometime between the vaccine and the dose of the medication, do that, don’t modify your treatments, just so that you can get the cross at a particular time. The only place where we would recommend specific guidelines within the context of somebody who may have had a bone marrow transplant or had some other kind of cellular therapies, in those contexts, we often recommend that you wait for a couple of months after the stem cell transplant, before we get the vaccines. But for all the other treatments that we are getting right now, we want to just within the schedule of the treatment that’s already on going, try and get the vaccine in between two doses.

Mary Leer:

For those who have been vaccinated and are living with cancer, you spoke to that in great depth, but I’m also wondering about people that are perhaps in post-treatment and let’s look at social distancing measures or other restrictions, are those different for patients versus the general population?

Dr. Shaji Kumar:

No, I think the proportions are the same, I think the social distancing and the masking should continue to be observed the same way, and I think the only other word of caution I think may be particularly relevant for the cancer patients would be, again, trying to avoid again those kind of being outdoors and larger groups of people, even if when you maintain the social distancing, try and not do that. The outdoors are probably a little better than smaller indoor gatherings, and it’s mostly the common sense proportions, and I think the cancer patients are probably more tuned to this because they have been following some of those things even before the COVID came on and post-vaccination, I would recommend that these steps don’t change at all, partly because we gain for a given person, we don’t know how robust the immune response that those patients have after the vaccination and the lack of good testing to say that, okay, now you’re fully vaccinated, your response is great, you don’t need to worry about getting infected.

Mary Leer:

Wow, thank you so much. That’s so helpful. I’m going to shift to vaccine hesitancy. This is an important topic for many. Drug development takes years, sometimes decades. Can you speak to those who might be hesitant about the speed of vaccine development around COVID. I’ve heard this often from other people saying, “Well, they develop this so quickly, how can we trust it?”

Dr. Shaji Kumar:

Yeah, no, I think those concerns are quite valid, I think vaccines have always been a very controversial topic and not just COVID vaccination but even for childhood vaccinations. There have been long-standing concerns that some of those vaccinations may be responsible for some of the issues that we see in the children and even in the late adulthood. I think what we really want to get across is, again, taking that question apart, and there are multiple different aspects to it, one is the whole concept of how we created the vaccine so quickly, we kept telling everyone from the time that it started that it takes five to 10 years to develop a good vaccine, and now we have something in a year, so obviously that raises concerns amongst people. I think it’s just a testament to how far technology has come. In the past, we had to isolate the protein and use that protein to develop the immune response, and what has been really unique about the COVID situation has been the Pfizer vaccine and the Moderna vaccine, both of which uses a new technology called the mRNA-based technology. And this is something that has been developed over the past decade to decade-and-a-half, and I would say this is a platform that was perfect, just waiting for the right opportunity to come along.

And the COVID situation really presented that. And even though it was the speed with which this was developed, is just because the technology has come along so much and we can actually do that, and the second is how fast the clinical trials have been done, and I think that speaks to, again, the infrastructure that they have been developed over the years to rapidly develop and implement a clinical trial. So the clinical trials, both Pfizer and Moderna trials had 40 to 50,000 people enrolled in a quick phase and the community transmission that was happening at a very high rate. We could get these trials done in a very rapid manner, so the patients or the people who enrolled in this clinical trial the fact that they were not getting infected could be determined in a much, much faster fashion than what you would have done in the past with any of the other vaccines. So I think the technology is robust. The [COVID]  trials are very well-conducted and the end point in terms of efficacy has been very well-determined or very accurately determined.  And given the size of these trials and the number of people who have been a goal, I think we can feel fairly confident that the risk associated with this vaccine is pretty low, so you can argue that one of the risk of a particular side effect is only 1 in 80,000. So maybe to the 40,000 people enroll in the trial, they may not have adequate numbers of that and that was certainly a concern when they started vaccinating. And we just know a couple of days ago, there was a publication that looked at almost like 63 million vaccination doses that have been given, and overall the risk of vaccine related side effects have been very, very minimal.

So I think that should also boost our confidence.

But on the other hand, we all heard about what would happen with some of those vaccines and the blood clots, and I think that even though…yes, it is, as it is a risk. It is a very, very small risk. And the fact that you were able to identify them right away again, I think tells us that should there be rare side effects, you’re going to find it, and we are going to figure out the mechanics of why those side effects happen. And we’re going to figure out how to avoid those things.

So, I think the information flow is so fast and all the data related to vaccines and the side effects are being captured in a real-time fashion that we would be… You’d immediately be of avail of side effects should that happen.

Mary Leer:

Wow, that’s so reassuring. Thank you.

Jeff Bushnell:

Another question kind of along the same lines, doctor is the last few days, especially, it’s Vaccine hesitancy has really become sort of the issue to the potential of achieving herd immunity, and how can everybody in the medical community, you guys are facing those stuff in a different way, but the average person, how can we help overcome hesitancy and increase the people’s trust in the vaccine, and also increase the equitable distribution amongst all populations? Some populations are hesitant to take it, others have distance problems for being able to get it. What can we do to sort of push ourselves over the hill to get to that herd immunity?

Dr. Shaji Kumar:

Yeah, no, You bring up a very important point, and I hope we are in a much better place than many parts of the world right now because we have one of the few countries where a significant proportion of the people have been vaccinated, but we are not quite at the point where we can claim herd immunity, I think we still need to continue to pursue this, and I think the ideal goal is to get everyone who’s eligible to get a vaccine vaccinated. Now, you bring up some of the very important points, because even though vaccine hesitancy is a real problem, the underlying reason behind this is manifold, and the only way to tackle that is we have a multi-front approach that will take into account what is the reason behind it.

So for the people where it’s hard to get to populations which can live in far from the areas, it may be more the ability to use those vaccines, which does need the complicated storage, for example, the J&J vaccine. You only need one dose. It’s easy to store. So that may be one of the approaches to be taken. And people who believe that this is a vaccine is going to create side effects, or it’s part of some grand scheme to introduce a variety of things. I think it’s a person of education, and I think they really need to tell them what can happen with. Not really just to them, but the fact that if you continue to allow these infections to proceed on stuff, there are going to be increasing numbers of mutations, and that in turn is going to make the pandemic much more difficult to control in the long run. So it’s totally an individual benefit, but it’s on to the society’s benefit to have everyone be vaccinated. And then definitely, I think knowing that should anything unto it happen, there’s going to be medical care that’s going to be available to these individuals, and I think that’s also an important point, so who are near and dear to them is going to be the key thing.

Mary Leer:

Here’s a question many cancer patients are unclear about if antibodies are present or if I have tested positive before, there’s a wondering, “Should I still get the vaccine?”

Dr. Shaji Kumar:

Yeah, I know the recommendation right now is to go ahead and get the vaccine, partly because we don’t know the natural immunity from the infection, how long does it last. So it seems like the antibodies can start to wane off the infection. And again, we don’t have a lot of data on it, but it looks 3 to 6 months, it might start waning at least to the level that they can detect. Now, whether that is sufficient or even the undetectable levels is protective against a future infection, we don’t know. There have been some reports of people getting a second infection even though they have been infected before again, scattered reports, we don’t know how widespread that phenomenon is going to be, so given all these, I think the current recommendation would be to go ahead and get vaccinated. We generally tell people to wait for two to three months after the infection to go ahead with the vaccination.

Mary Leer:

Alright, thank you

Jeff Bushnell:

Should people… Is the idea of pre-screening, especially for cancer patients, maybe who may be at risk, I guess, to see whether they have antibodies or whatever, be an effective thing to decide which vaccine they should get? or I know, as I say, I was in the trial and they were very forthcoming to the participants with what the numbers were, and I was flabbergasted at how effective the vaccine was, it was just amazing to me, and that kind of information that I guess is not available publicly maybe it should be. Does it help to decide which vaccine you get? All I hear on the TV is get the first one you can. What are your thoughts on that?

Dr. Shaji Kumar:

Yeah, no, I completely agree with you. I think even those numbers may mean… You look at the Moderna and the Pfizer trials, and they said, now over 90 percent effective. Look at the AstraZeneca trials, you know, it’s like they recorded 70 to 80, 85 percent, and the J&J about 80 to 90 percent effective. Do these numbers mean much? It’s really hard to know, I think, partly because they have been tested in, again, different countries, different times, as the virus was continually changing its characteristics. So it does it mean… So one could argue that maybe the vaccines that were tested later on when this will be some of the mutants were already there might be more effective, but we don’t know.

I think at the end of the day, 80 versus 90 is not something we would decide a vaccine on. The fact that, yes, if something was only 10 percent effective versus 90 percent, it’s a probably different story. So based on the numbers we have seen, I would say whatever you can get to first, if you don’t want to get jabbed twice, maybe you go with something that goes, it’s only one dose, but that may be the only distinguishing factor here, but nevertheless, I think we have to just get the vaccination, the first vaccine that we can get our hands on.

Mary Leer:

So let’s hope there is some good that comes from the bad. Are there any noticeable trends born out of the pandemic that will be or could be a benefit to the future of cancer care or research?

Dr. Shaji Kumar:

Mary, That’s a very important question, and I think we always learn from adversity, and I think this is going to be no different. I think, especially when the pandemic hit back in the spring of last year, we all had to think fast on our feet to figure out how best to continue to tell about the best care for the cancer patients without compromising the care in any way. And we knew that bringing the patients back into the clinic at the same rate we did before the pandemic would expose them to significant risk for infection, so how do we continue with treatment? There have been very different things people have tried…one of them is to try and get the medications to patients at home. If they are on IV medications, they can be changed to something that’s comparable that can be given by mouth. We already did that for some patients. For some patients who used to come to the clinic very often, so we figure out is there a way for them to get some of those testing done in a clinic much closer to home, so they can avoid the travel, they can avoid being in a bigger city, they can avoid being in a bigger institution, again, reducing the risk of exposure, and then you look at those numbers and then decide on the next course of treatment. We converted many of the clinic visits to video visits. Nothing is as good as having the patient right in front of you, but this is the best we could do under the circumstances.

And I think that helped. So I think the clinical trials was a big problem because in many of those trials were done in a very rigid fashion with very little variability allowed within the protocols. And everybody loosened from the clinical trial sponsors, the pharmaceutical companies, the institutional review board, the investigators to try and build flexibility into those clinical trial structures to allow patients to continue to be on those trials, many of which are important and both helping. So what does that mean for the future? I think the video visits are here to stay, I think we will continue to utilize that and bring patients back to the clinic only when it’s absolutely needed. I think the clinical trials will have in-built flexibility so that patients can enroll on clinical trials remotely, they can potentially be given some of those medications at home, maybe it would be something where we would check into the patients on a regular basis to make sure things are proceeding in the right way. I think there are increasingly technologies that will allow the patients to communicate in real time with the care team and also provide many of the data that we need through iPads or iPhones, Apple watches, whatever we end up using.

So that is that I think that technology will rapidly take off in the next few years, I think. So I think a lot of the care of the patients with cancer in general, and particularly cancer patients, I think is going to look very different five years from now, because of all these things that we have always thought of and we thought, “Yeah it will take time to implement, it’s difficult.” Now we figure it out in a year. We can do a lot of those things.

Mary Leer:

Yeah, thank you.

Jeff Bushnell:

For the final question, you’ve given tremendous information here, Dr. Kumar w What’s the final takeaway for the average cancer patient and caregiver, how to get through this? What’s your bottom line for us all?

Dr. Shaji Kumar:

Bottomline is, I think Your cancer treatment comes first, let’s not compromise on it, let us do it as safe as we can by observing all the instructions in terms of social distancing, masking, avoiding gatherings, getting vaccinated, and make sure you keep connected with your care team. You don’t have to be in the clinic to do that. There’s a variety of different tools, I think every hospital has options to either through their medical records to message their care team, or set up video visits and so forth.

So we want to be in a state where it was before the pandemic in terms of your communications, but use the technology, so we can decrease the risk of exposure without compromising the quality of care.

Mary Leer:

Alright, well, thank you so much, Dr. Kumar, that you have just given us such valuable information, and I want to thank Jeff as well, and the Patient Empowerment Network for putting this together.

Jeff Bushnell:

Thank you, Dr. Kumar, appreciate it.

Dr. Kumar:

Thank you, Jeff.

How Can Myeloma Patients Take Disease Ownership and Connect With Resources?

How Can Myeloma Patients Take Disease Ownership and Connect With Resources? from Patient Empowerment Network on Vimeo

What actions can multiple myeloma patients take to ensure the best care? Expert Dr. Joseph Mikhael shares his perspective on how patients can take ownership towards optimal myeloma care.

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Transcript:

Dr. Joseph Mikhael:

I have long believed in patient advocacy, that we need to make systemic changes, we need to make changes within the healthcare system. But our patients are partners alongside of that, and there are many ways in which patients can be empowered to ensure that they have access to the best treatment possible, and this really begins with their own belief and understanding that they are part of that solution. This is…as one of my patients always used to tell me, I am taking ownership of this disease, I don’t want to own it, but I’m taking ownership of this disease. And that initial thought process, I think is important, secondly, to educate oneself about it, there is so much to learn, and there are a lot of difficult ways that it can be difficult to navigate resources. But there are great resources available because patients who are informed and understand their condition more can definitely facilitate the process to their best care. Thirdly, we’ve come to appreciate that having access to a specialist is very important, multiple myeloma may account for only 1 to 2 percent of all malignancies, and so very often, it may be difficult for a community oncologist to keep up with all of the details, and so…

Now, perhaps more than ever through the pandemic with access to telemedicine, patients can seek out an expert opinion. I prefer to call it an expert opinion over a second opinion because it doesn’t mean the first opinion is wrong, it just allows further education, further understanding to enhance one’s care. And then, of course, lastly, to be involved in community and other efforts that really push us towards better access for treatments for patients and better education are reducing the stage of this disease, so we can all provide the best care possible for our patients. 

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.

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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

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.

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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.