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Published on December 21, 2020
What Patients Should Know About Navigating Telemedicine
The COVID-19 pandemic forced an explosion in the use of telemedicine, meaning that many people see their MPN doctor on a screen rather than in an exam room. Is it just as good? Without hands-on appointments, are you really able to receive quality care? Could telemedicine even improve the quality of your MPN care? Finally, what does this mean for how MPN patients will receive clinical care moving forward?
Listen in as experts discuss these topics to help viewers navigate the virtual world of healthcare, and ideally maintain and improve the quality of their doctor-patient relationships. Esther Schorr, Patient Power co-founder and patient advocate, guides this segment with Dr. Aaron Gerds, MD, associate professor of Medicine at Cleveland Clinic Taussig Cancer Institute and Dr. Suman Kambhampati, MD, clinical program director of the Sarah Cannon Transplant and Cellular Therapy Program at Research Medical Center.
This program is sponsored by Incyte and is produced in partnership with the MPNRF. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.
Transcript | Can Telemedicine Improve the Quality of Your MPN Care?
Esther Schorr: Hi there, this is Esther Schorr. I'm your host today for this installment of Answers Now. Today's show is going to focus on telemedicine for MPN patients, and actually all cancer patients with a complex care team. Our show today is going to be a little bit different than what we're all used to. One of our experts, Dr. Aaron Gerds, who is an associate professor of Medicine at the Cleveland Clinic Taussig Cancer Institute, couldn't make it to our live webinar, but we were able to record a live interview with him earlier this morning, so in just a little while, we're going to see some questions and the answers from him.
In the meantime, we are very lucky to have Dr. Suman Kambhampati with us, who is the co-medical director of the Blood Cancer Program at Sarah Cannon Cancer Institute, HCA Midwest Health, located at the Research Medical Center in Kansas City. That was a mouthful. Welcome, Dr. Kambhampati.
Dr. Kambhampati: Thank you for the introduction, it's great to see you, and looking forward to this program, thank you.
Esther Schorr: Before we hear from Dr. Gerds, I want to talk to Dr. K. So, do you have any advice for people who aren't as comfortable with technology? Do you have any advice for people who are just not tech-savvy?
What Is Your Advice for MPN Patients Who Aren’t Tech-Savvy?
Dr. Kambhampati: Wow, what a question. I'll tell you this. My experience within the veteran system and in the private sector has been that generally, patients are camera shy and audio shy in the beginning, so that's a natural instinct. However, when they see the impact and when they see how easy these tools are, particularly a telephone-based visit or an audio telephone or audiovisual based visit from their home or wherever, nearest office, they are absolutely stunned by the ease of its use, and frankly, once they have done it once or twice, they don't want to go back to any other modality. Unfortunately, they still have to periodically come and see us, but the majority of routine follow-ups these days within our system are done by telemedicine, so even the camera-shy patients now have become tech-savvy.
Esther Schorr: So, before we go on, I have many more questions for you. We're going to hear for just a couple of minutes from Dr. Gerds because he answered a few questions that we may not get to in our dialogue. So, I want to start by talking a little bit from a historical perspective, how do you see telemedicine being different now than it was at the start of the pandemic?
Has Telemedicine Improved Since the Beginning of the COVID-19 Pandemic?
Dr. Gerds: So, some of the big things that have changed, under the hood, if you think about the technology's a lot different. If we could all remember back to last year, the time before, where we do teleconferences or telemedicine, and the platforms were very clunky and junky. Poor connection, the video feed would be in and out. We'd often have to convert from video visits to telephone visits.
So just the technology's much better. I think I get daily updates from Zoom trying to make Zoom better, so just that is better. The security is better, so the infrastructure within the computer systems that make sure that your patient information is secure, and isn't leaking out into the interwebs, is really important too, so security, technological security's much better.
And integration. So, integration with the electronic medical record has also occurred over the course of the pandemic. So now, before, when I had a virtual visit, it was on a completely separate platform. So, I'd either just use a good old-fashioned telephone to have a telephone visit, or there was this other video chatting app we had that would sort of work sometimes, but now, actually, I go into the patient's chart and electronic medical record, it's all in there. I click, they connect, it's smooth, and it is now part of the electronic medical record system, which makes things more seamless, both for the patients and the providers. So, there's been significant gains all throughout the pandemic, certainly from the technology standpoint.
Esther Schorr: Right. So, what would you say are some of the limitations of this format, and what strategies do you use to overcome those limitations?
What Are the Limitations of Telemedicine, and How Can Doctors and Patients Overcome Them?
Dr. Gerds: I think the biggest and most obvious limitation is no physical exam. I can't really reach through the computer screen and do a spleen exam, so I see a lot of patients with myelofibrosis or polycythemia vera who have big spleens, and part of monitoring their disease is monitoring their spleen size. And so that's just one example where the physical exam is really difficult to do.
Some parts of the physical exam, you can do. The good old-fashioned, you know, the old docs will talk about it, the eyeball test, where you just see a patient, you know what's going on with them. So you can still do the eyeball test, which is fantastic, and you can see how someone's breathing, you can check their range of motion, you can have them get really close to the camera and you can look in their mouths and check their mucus membranes and things like that, so there's lots of parts of the exam, the visual parts of the exam you can do, but obviously, you can’t listen to someone's heart with a stethoscope, or someone's lungs or do a spleen exam. So those parts are missing.
But you know what? Patients really know what's going on with their body. Almost all my patients with myelofibrosis say, "Yep, my spleen is about an inch longer, or an inch shorter, this is what's happening." People are really in tune their bodies and help make up that gap. If monitoring, a physical examination's a key piece of what we need to do, we'll start alternating visits. So, we'll do one person visit, one virtual visit, one person visit, you know, just so we can continue to monitor things more closely.
Other things that are missing from a virtual exam that we would normally do is really that in person feeling. So, with the video visits, you can at least get some of the body language, you can make eye contact, things like that, but there's something about being in the same room with someone where you really get that full, 360 degree, one on one conversation, which you just quite don't get with a video. But virtual visits are good, and they're really letting us fine tune what information we really need, and what can we forego.
Esther Schorr: Working these evaluations virtually, has it made a difference in how you make your decisions about next steps for a patient? How you treat would them?
Does Virtual Healthcare Influence Decision-Making for MPN Treatment?
Dr. Gerds: It does. If I'm seeing someone in person, or someone over Zoom within the region, thinking about different treatment options going forward, clinical trials are always on the menu. Full disclosure, we do lots of clinical trials here. We're always trying to push the care of patients forward. Whenever I see a new patient, that's one of the things I'm thinking about. What trials would they be eligible for? What should we consider as part of their treatment regimen?
Clinical trials, the regulatory oversight for a clinical trial is such that where it needs to be done at the center that has the trial open, right? So, if you live, for example, if the trial's open here in Cleveland, and you live in Arkansas, the trial may require for you to be seen every month. It might be difficult for you to get from Arkansas to Cleveland every month to be seen.
Knowing that we might talk more about, "Well, what's available in your area? Is there a center with a trial open? Or what standard care options might there be for you, knowing that the travel may be difficult? You could maybe get up here every three months, but not every month. Or we could do some virtual stuff." So standard care might be more of a focus on, well, what standard care options are if you can't travel to a center that has a clinical trial. So, I think it really impacts that quite a bit.
Esther Schorr: So, as we get to wrap up, Dr. Gerds, do you have any parting thoughts for our audience?
What Should MPN Patients Know About Telemedicine?
Dr. Gerds: I think telemedicine, again, is here to stay, I don't think it's going anywhere. And it has distinct advantages. There's no distance, it's the distance between you and your iPad basically, right? Your smart device. And I think it can really help people who live in all kinds of regions of the country access care from specialists, people who focus on their disease alone, which is not... Not something that has been available to them prior to all this technology being developed.
I think the way it's being integrated now with electronic medical records is only going to push that forward. Insurances now are figuring out ways to cover this and pay for it, and so really, it's just another tool in our box to take care of patients, and broaden the way we care for our population and can be helpful for a lot of folks, especially those folks who aren't able to travel in or don't live near a big medical center.
I think it's going to be a real big help for them, in taking care of them, coordinating their care locally and I want to reiterate that it is safe. There is tons of new measures within the technology to protect your personal information. Virtual visits can open up that opportunity for a second opinion, and you know what? At the end of the day, if the second opinion's just the same as the first, great, you get that peace of mind.
Esther Schorr: Thank you so much. This was really an informative session. That was a lot of good information from Dr. Gerds, but I want to get Dr. K back. I'm just wondering, was there anything that Dr. Gerds spoke about that you'd like to elaborate or react to?
Dr. Kambhampati: I think he summed it up beautifully, the potential of telemedicine, he did a spectacular job of summing it up. He also touched briefly on the clinical trial aspects of telemedicine and yes indeed, there are some constraints in using telemedicine for clinical trials, but nonetheless, the first touch and the second touch and subsequent touch can certainly facilitate screening for clinical trials, and that's going to keep evolving and getting better with time, but I thought he did a great job in introducing the impact of telemedicine in medicine, particularly for MPN patients.
Esther Schorr: Right, and also, I know that he also talked about the access to care that's been improving for people who live in rural areas.
Dr. Kambhampati: Here in Kansas City, I can tell you that the outreach regions for Kansas City span all the way from Saint Louis to southern Missouri, and then we have a huge stretch of western Kansas. So, we have touched, almost every geographic location using telemedicine, and I'll share a quick example about a patient who was seen by telemedicine, and he got admitted overnight.
Turns out that he had fevers due to COVID-19 infection, and clearly a big change in his clinical picture. All of that prep work for admission was done by telemedicine. And there are several other examples, like in which cases we have come up with a pre-visit checklist, so that the patients have all of their workup done, and including the symptom assessments, the MPN symptom score, also referred to as MPN 10 form. So, these folks, they fill out these forms and questionnaires prior to the meeting, and if there is any need for genomic testing, either the MPN menu of genomic testing or a broader array of genomic testing, we can all get it done these days irrespective of the location, rural or urban, really doesn't matter because there is more Medicare coverage, and also private insurance coverage for these types of testing.
A lot of times, the physical exam portion of the visit can be done by the local provider, and that's been a success in terms of seeing these patients for the first time via tele, and in fact, in some patients, we've been able to continue the entire continuum of care via telemedicine.
Esther Schorr: What are the key components of managing an MPN patient? You feel that you can accurately assess through a teleconsultation through telehealth, there's certain things you've mentioned that you really have to be there in person, but what are the key things that could be accomplished well, and you would feel comfortable with for an MPN patient?
What Are the Key Components of Managing an MPN Patient’s Health Virtually?
Dr. Kambhampati: The key things that we can measure using telemedicine are symptom assessments, so review of systems is something that can be done by telemedicine, and there are very specified forms for MPN symptom assessments which we generously share with the local providers and also send the same form to the patients to fill it out at home with their spouses or caregivers around them, because that really gives a much broader perspective about how a patient is doing than a patient in fact coming to clinic alone without a caregiver these days with all the restrictions, and filling out the form. So, I strongly feel that they give us a much accurate information about their symptom complex via telemedicine and by filling out those forms before the visit.
The next component of measuring MPN is, impact of MPN is physical exam. Physical exam certainly plays a key role, particularly in diseases like myelofibrosis, in which you need to know the spleen size, and that's something that can also be substituted these days by doing either a radiological scan or an ultrasound or something like that. Or collaborating with the local providers or the local oncologists to do the physical exam component of that visit. That's been successful as well, along with general labs and other radiological tests that are done as part of the routine evaluation for an MPN patient, so I would simply put it down as symptom assessment, and assessment or physical exam for organomegaly and lymphadenopathy.
Esther Schorr: And it just occurred to me that you mentioned that during the pandemic, care partners, caregivers can't come along to those visits, and sometimes, their input about progress and actual symptoms that continue, sometimes I know the stories of a patient who will come in and the doctor says to the patient, "How are you feeling?" And they say, "Oh, I'm fine." And the spouse or the loved one says, "He or she's not doing fine. He hasn't been sleeping, he hasn't been eating," so maybe that's an added benefit that if you get them both on the telemedicine consultation, that that might be a good thing.
Dr. Kambhampati: Esther, you hit that point so well. I think that's a very nice depiction of what we are seeing with telemedicine. Again, this case that got admitted overnight, I saw him yesterday via telemedicine. He was sitting in the background and the spouse was sitting in the foreground, and she kept nodding her head, and she became emotional during the visit, and that pretty much told me that this man has not been feeling well, and it was very clear just looking at him that he had lost a lot of muscle, and was looking sarcopenic and fatigued and tired, and he was under-reporting his symptoms to some extent, and the emotions were right there in the foreground.
So, we got him admitted and we realized how sick he was. A lot of these symptoms were not only caused by the MPN but also because of COVID-19 infection. So absolutely, and that's something that we could have missed by the way, had this patient arrived on his own without any caregiver with him.
Esther Schorr: Okay, so one of our listeners, Terry, said, "I have my first chance to speak with an MPN specialist, and it will be via Zoom. I know I can have a list of questions, but how else can I best be prepared, and what should I expect from this meeting?" So, let's use Terry as a test case. First, can you tell us about what it means for people with MPNs or other rare cancers to be able to see a specialist that way for the first time? And are specialists now more available for a first visit?
Are MPNs Specialists More Accessible Through Telemedicine?
Dr. Kambhampati: Absolutely. My message to Terry would be, Terry, I think your visit will be extremely efficient if you do some prep work prior to that meeting. And the prep work could be done by just learning about the disease and the symptoms associated with the disease, and to create a checklist of symptoms or questions prior to the meeting. These days, since physical exam is not mandated as part of consultations, providers, MDs, and all are spending more time talking to the patient, educating them about the disease, educating them about treatment options, clinical trials, so on and so forth, because they don't feel the rush of completing the visit, or including the physical exam in the visit.
So, my sense is that patients and providers feel more connected using these audiovisual tools these days, and they are learning about the disease and what to expect from the treatments perhaps a little bit better than during these clinic visits, where everyone feels perhaps a little bit more rushed than a telemedicine encounter.
Esther Schorr: How can they be sure that that information in their consultation via telemedicine is going to get back to their local doctor, to their local physician? Have those things been connected yet in general?
Dr. Kambhampati: Absolutely. The typical way it happens is that even when we see patients on a face-to-face encounter, they take those notes or transcribe those notes and those letters or notes are good for the provider or for the treating MD, the local MD. That process is still in place and it happens seamlessly irrespective of virtual visit or a face-to-face encounter, so nothing has changed in terms of physician-to-physician communication or physician to a local provider communication in this era of telemedicine. In fact, I would argue that those communication channels are perhaps open more than ever before.
Esther Schorr: We just got a really interesting question, Dr. K, so I'm going to throw it in here. What is being done to overcome state licensure requirements or barriers for practitioners to let them assess patients across state lines?
Dr. Kambhampati: Now, the state licensure issue, as you know, has been raised as a barrier to medical delivery in the COVID-19 era, and certainly those trends are going to be there for a while, so I can only imagine that this plague will open up some new ways to address these barriers, but within the federal system, there are no barriers whatsoever, irrespective of the state or the licensure.
Esther Schorr: Well, okay. Before we wrap, I just have one other question. Not that I assume that you're a psychic, but how do you think telemedicine's going to look a year from now, five years from now, next generation? Where do you see this going?
What Does the Future of Telemedicine Look Like?
Dr. Kambhampati: Telemedicine is here to stay, Esther, I have no doubt about that, and again, I've seen the evolution of this technology over years starting with the history of telemedicine in the state of Kansas, we were briefly talking about that. So, telemedicine is here to stay. The tools that are going to be available to make this technology even more powerful and impactful are only going to get better with time.
I think my psyche tells me that in five years from now, or even 10 years, or even shorter time frame than now, we're going to see the majority of medicine being practiced by telemedicine, and I'm not just talking about regional medicine. I'm talking about nationalized form of telemedicine, and perhaps beyond continents. So that's going to happen, it's a matter of time. Business guides decisions and the business of telemedicine is booming right now.