Telemedicine Visit Preparation Tips From Myeloma Patients to Myeloma Patients

Telemedicine Visit Preparation Tips From Myeloma Patients to Myeloma Patients from Patient Empowerment Network on Vimeo.

With the pandemic altering our conventional communication methods, how can myeloma patients be prepared for upcoming telehealth appointments? Myeloma patients Barry Marcus and Honora Miller share their top tips for being as prepared as possible for a telemedicine visit.

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Transcript:

Barry Marcus:

One of the virtues of it is that you can seek opinions from a wide geographic area, you don’t have to travel, some opinions that you might want to get could be thousands of miles away, and I didn’t feel when I had a telemedicine visit that was really much different than an in-person visit, we talked about the same things we would have had we been face-to-face, and I was very happy with it.

Honora Miller:

I’ve had quite a few telemedicine visits since the beginning of COVID, almost the entirety of my myeloma specialist visits have been via telemedicine. And I don’t have to drive an hour and a half to get there. My doctor is on time. We have the same conversation we would have had in person, and it’s very efficient, I come with my list, and it’s very efficient. I do see my local oncologist via in-person every other month so that they can lay their hands on me, and that seems to be sufficient, but every other month, just before my infusion, I’ll have a telemedicine visit with the oncologist and that’ll be sufficient and it’s cut down on a lot of anxiety around COVID.

Barry Marcus:

I would definitely recommend having, as you mentioned, a list of questions before you initiate the meeting, and think about what you really want to get from the meeting, and then review your list maybe towards the end and make sure that you have gone over the things that you wanted to talk about.

Honora Miller:

Agreed, I feel that it helps focus the conversation, and then you just know you’ve covered everything that’s concerned to you.

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials? from Patient Empowerment Network on Vimeo

What impact has telemedicine had on multiple myeloma clinical trials, and what effect will it have on trials in the future? Expert Dr. Joseph Mikhael explains the impact of telemedicine early on in the COVID-19 pandemic, how he uses virtual visits with his patients currently, and the role and benefits of telehealth in the future of myeloma care.

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Transcript:

Dr. Joseph Mikhael:

COVID-19 has impacted our lives in just about every way imaginable, and in multiple myeloma, sadly has very much impacted our ability to conduct clinical trials. Thankfully, now that we are out of the immediate acute phase when many trials were suspended, we actually have been able to work around this in general, where now we’ve been able to re-introduce studies and bring in new studies, of course, and we can do so in a more careful manner. Many of our clinical trials now are allowing intermittently to have telemedicine visits, which reduces the traffic for patients and makes it a little bit smoother. Some of the questionnaires and the things that we used to have to fill out on paper or physically in-person now can be done electronically, and so I think in many respects, we’ve really overcome most of the barriers so that we can continue the outstanding work and clinical trials to provide options for our patients that were not available before.

And looking to the future, I hope, even paradoxically in some way that this may — now that we’ve developed a more sophisticated telemedicine platform — it may allow us to do more and perhaps reach patients that may not have been reached before, there are already studies and trials that are being done through telemedicine, not necessarily a drug trial but quality of life studies, engagement studies, educational studies, different ways that we can enhance a patient’s experience and investigate better ways of doing things now that we can do so more fully electronically.

So, when I think of telemedicine and the future in multiple myeloma, I think it will continue to have a role in the long term. I think, much like people think that there will be more virtual meetings, I think we all want to get back to in-person meetings of various types and sizes and shapes, there will always be a component of virtual, and I can think even in my own practice and some patients that have quite a long drive to come down to see me, that they will still have to have face-to-face visits, but intermittently when the things are going well, follow-up like visits where the discussion may be limited.

I think there will be a role for this so that we can leverage the best of telemedicine and the best of in-person medicine so that the patients can receive the best care possible.

What Multiple Myeloma Populations Will Benefit from Telemedicine?

What Multiple Myeloma Populations Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo

Which multiple myeloma patients will benefit most from telemedicine visits, and which patients can get more from in-person visits? Dr. Joseph Mikhael shares information on how to ensure the best myeloma care even during pandemic restrictions and how in-person visits have adjusted to limit COVID exposure risk.

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Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

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Transcript:

Dr. Joseph Mikhael:

When it comes to making a decision around, do I need to go into the clinic or can I do this as a telemedicine visit, of course, that has to be discussed with the healthcare team, but a few things we’ve learned through this pandemic.

And perhaps one of the most important things we’ve learned through the pandemic is that controlling one’s disease, controlling one’s myeloma is critical to protecting people against COVID, sadly, many of our patients who have struggled the most with COVID are those who had very active myeloma. So, we emphasize the importance of making sure that one continues to receive the best myeloma care possible, and very often that is going to involve an in-person visit, not only for discussion, but, of course, for the actual receiving of treatment. Secondly, I think it’s very important for us to note that we really have not seen significant spread of COVID or almost any infection within our hematology-oncology clinics, we’ve taken particular precaution around this area. So, this is different than someone maybe going out to a more public place where the risks may be higher. And so, we try to reassure our patients that coming into clinic actually is really not a high-risk situation and, in fact, perhaps lower risk than ever in light of the fact that many of our waiting areas and places where we have patients have been restructured and have fewer patients because of telemedicine visits.

And then thirdly, and very importantly, whether it’s telemedicine or in-person, it’s really important to maintain open, honest, and clear communication with the healthcare team. And if that is felt that it’s being done to a certain extent in telemedicine, fantastic, but there are situations where it’s challenging and difficult and really must be face-to-face. And so I would want to encourage my patients not to be afraid to go in to receive treatment and to meet with their healthcare team. These are generally very safe places that we take special precautions to ensure their patients can receive the best care possible.

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

Are There Any Barriers For Multiple Myeloma Patients Using Telemedicine? from Patient Empowerment Network on Vimeo

Along with all the benefits of multiple myeloma care via telemedicine, there are some obstacles that providers run into as well. Myeloma expert Dr. Joseph Mikhael details his experience with telehealth barriers in caring for his patients.

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Transcript:

Dr. Joseph Mikhael:

So there are several limitations to telemedicine, despite better technology and camera strength and Wi-Fi, and we’re removing all those distractions, it really is limited by not being able to physically be present with a patient, which means we can’t examine patients, which means we can’t hug our patients, I’m a hugger as an oncologist, I like to get close to my patients, and then of course, there are those things that don’t always convey themselves easily over a camera or a computer.

The emotion in the room, the tension, the fear, many of my patients experience fear being cancer patients, and so telemedicine can be very helpful when we have more straightforward follow-ups and questions, but initially building a bond with the patient and having very considerable discussions about one’s treatment and on symptoms, it is always going to be limited in a telemedicine capacity

Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

Will Telemedicine Be An Advantage for Multiple Myeloma Patients? from Patient Empowerment Network on Vimeo

With the rise of telemedicine into multiple myeloma care options, unforeseen benefits have occurred along with those that are well-documented. Dr. Joseph Mikhael shares what he’s experienced in caring for his patients.

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Transcript:

Dr. Joseph Mikhael:

The pandemic, both in the short term and the long term has really revolutionized much of what we’re doing in medicine, telemedicine is one of those areas. It’s, despite all the challenges that we faced of social isolation, it really has given us an opportunity to not only see patients who we may not have already seen but also allow us to develop a relationship with patients where we can determine when is it best and needed truly to be seen in-person. And when can we do visits by telemedicine, allowing the patient to have less travel time and the challenges of coming to the clinic and allowing us to keep our clinics limited to those patients that genuinely need to be seen face-to-face. So it’s really now been a wonderful adjunct to the way we care for patients, doing so continuously in a human fashion, but also leveraging the technology and that we can use for this.

Are There Limitations of Telemedicine for Multiple Myeloma Patients

Are There Limitations of Telemedicine for Multiple Myeloma Patients from Patient Empowerment Network on Vimeo.

What have some multiple myeloma patients seen in terms of limitations of telemedicine? Myeloma expert Dr. Sarah Holstein details some obstacles some of her patients have gone through – and share some benefits that she’s experienced with her patients. 

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Transcript:

Dr. Sarah Holstein

So, I’ve actually found that there’s very few limitations. One of course is access to the appropriate technology to be able to do telemedicine, so there are a few patients that I really just need to do telephone visits with, and I think those are a little bit more difficult there’s just something about being able to see somebody on the screen that you kind of get an immediate sense for how they’re doing, and that’s a bit lost when it’s just via telephone. So, for those patients who either because of not having fast enough Wi-Fi service based on where they live, or just not having the access to the technology, video cameras, phones with videos in them, that can be a restriction.

But otherwise, I think this has been a really good thing for my patients, and it’s given me a glimpse into their home life, I can’t tell you how many times I’ve had dogs or cats wander into the telehealth appointment, and usually we stop to talk about those dogs or cats, and it’s just a way to really get to know my patients a little bit better, it’s allowed me to see more family members because many times, not all the family members would be able to come for an in-person visit, but now they’re at home and so it’s given me more insight into how my patients live.

How Will the Pandemic Impact Multiple Myeloma Trials?

How Will the Pandemic Impact Multiple Myeloma Trials? from Patient Empowerment Network on Vimeo

How has the COVID-19 pandemic changed multiple myeloma clinical trials, and how can telemedicine play a role in trials? Dr. Sarah Holstein shares her perspective on how trials were altered and her suggestions for improvements in trials.

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Transcript:

Dr. Sarah Holstein

Early on, I was very concerned about the ability to conduct clinical trials during the pandemic, early on, at least in our institution, and I know that there were many others across the country, there was a lot of concern about really limiting what was considered by the IRB (Institutional Review Board) to be an essential contact. They perhaps placed an emphasis on later phase clinical trials and thought that the earlier phase clinical trials weren’t necessarily proving to be a benefit for patients and therefore shouldn’t be opened, and I would have to say that that was not what my thought was. I really think that all clinical trials, whether it’s a Phase I, Phase II, or Phase III or of utmost importance to our patients and are important for their care. So again, early on, I was very concerned about limiting the access of clinical trials to patients. As the pandemic has continued and it’s become clear that this is going to be life as we know it for unfortunately, quite some time, I know at our institution, we’ve really tried to be as safe as possible, but all clinical trials are open and we’re allowed to enroll, I think there still is room for improvement with respect to how telemedicine is incorporated into clinical trials, and whether or not we can do things like allowing patients to get their study labs drawn closer to home as opposed to traveling to the academic center, so I think there continues to be room for improvement for really trying to minimize the amount of traveling that people do, and therefore the amount of potential exposure that patients have.

We still are not routinely using telemedicine for the clinical trial visits, that most of those are still in person. And I think depending on the specific trial, that is probably appropriate if you have a new agent and a lot of what you’re looking for is evidence of toxicity, I think it is important to be able to evaluate the patients in person and really be able to conduct a normal physical exam, having said that though, if a patient’s on a clinical trial where they’re receiving more standard of care, and perhaps it’s in a maintenance phase of a study, I think being able to utilize telehealth for some of those more routine visits would really be beneficial for both the patients and the healthcare team.

Is Telemedicine Here to Stay for Multiple Myeloma Care?

Is Telemedicine Here to Stay for Multiple Myeloma Care? from Patient Empowerment Network on Vimeo.

With the emergence of telemedicine for multiple myeloma care, it’s being looked at for long-term care. Myeloma expert Dr. Sarah Holstein shares her hopes for the future of telemedicine – and shares some tips for optimizing telehealth visits.

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Transcript:

Dr. Sarah Holstein

I really hope telemedicine is here to stay. If you’re practicing in a place like I am, where patients come from quite a distance, it would be great in the future if some of the more routine visits, can be a telemedicine and perhaps get into a rotation or maybe every three or four months, they come and see me in person versus the rest of their monthly visits via telemedicine. So, I very much hope that the government, as well as insurance carriers will continue to provide coverage for telehealth visits in the future, because I think it’s really broadened access for patients and it’s been a really wonderful thing for them in general. In terms of tips for preparing, some of it just comes down to understanding the technology and getting familiar with what you need to click on and making sure that you’ve allowed your iPad or your phone or computer access to your camera, it sounds silly, but sometimes a big chunk of the appointment can be eaten away because of the settings being wrong or pop-ups, so some of it is just trying to figure out the system ahead of time before you log on.

But other than that, I would say, making sure that you understand from your health care team, whether or not you can forward the link, if you’re using Zoom, for example, to other family members, so that you

can have multiple family members kind of Zoom in at the same time to be able to listen, and that way you’re not relying on yourself to take notes, and everybody doesn’t have to be in the same place at the same time, which again, given the pandemic is not wise anyways. So, I think just trying to figure out the technology involved and then making sure that you can have access or provide access to your family members or friends who want to virtually come to your visit with you is key for a successful visit.

What Are the Benefits of Telemedicine for Myeloma Patients?

What Are the Benefits of Telemedicine for Myeloma Patients? from Patient Empowerment Network on Vimeo

How will myeloma patients benefit from telehealth visits? Myeloma expert Dr. Sarah Holstein shares benefits she has seen while caring for her myeloma patients including broadening access and the ease of seeking a second opinion.

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Is Telemedicine Here to Stay for Multiple Myeloma Care?

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Transcript:

Dr. Sarah Holstein

So, I think telemedicine has been one of the few silver linings of this entire pandemic, I had personally never utilized telemedicine previously in my career, and now I’m using it almost extensively these days to care for my myeloma patients.

I’ve always had patients who tell me that they wish they didn’t have to take a half day off to come to a clinic appointment, and sometimes the clinic appointments are only 20 minutes, but they’re driving an hour and a half or two hours or more to come to those clinic appointments. So, some of it has just been the freedom that allows patients to go about their lives and not have to take time off of work or time off from other things that they’re doing to physically travel to come and see me. Telemedicine though, has also really broadened the access to me in my cancer center, again, based on where I’m at in Nebraska, patients would sometimes have to travel a very far distance to see me, and these days it’s just a matter of logging on via Zoom to access me, and it’s allowed me to see patients for second opinions in not only different parts in Nebraska that otherwise would have been difficult to reach, but also really across the country.

So, telemedicine in general, has allowed patients much more flexibility in seeing me and has also allowed the ability for me to do second opinions without making patients travel quite a distance.