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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.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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What Are the Benefits of Telemedicine for Myeloma Patients?

 

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. 

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.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

What Multiple Myeloma Populations Will Benefit from Telemedicine?

 

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.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

 

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.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

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How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

 

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.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Best Practices for Multiple Myeloma Patients Utilizing Telemedicine?

Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

What Multiple Myeloma Populations Will Benefit from Telemedicine?

 

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.

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients? from Patient Empowerment Network on Vimeo

With the entry of telemedicine into the multiple myeloma care toolkit, there are some real benefits to the cost of care visits. Dr. Sarah Holstein outlines some of the financial benefits that she’s seen for her patients – and how the logistics of scheduling appointments has changed.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Transcript:

Dr. Sarah Holstein

So, there’s definitely quite a bit of financial toxicity associated with being a patient who has myeloma. There of course is the cost of the drugs and treatments themselves, but there’s also the personal time cost. So, the cost that it takes to perhaps take a half day off of work or a full day of work to see your provider in person, and the flexibility that telemedicine allows, namely being able to do your appointment from either the privacy of your own home or in some cases the privacy of your own office or even your own car, really allows patients to keep going about their business without having to take all that time off to come travel. There’s the cost associated with gas mileage in some cases, costs associated with parking, although thankfully, that’s not a cost that’s occurred here at Nebraska Medicine. But I certainly know that that can be an issue at other institutions and can really add up for patients over time. So, it’s really been so much easier for patients to get in to see me even when my schedule is fairly full, because they don’t have to think about, “Well, I don’t need to leave work an hour, try to go over my lunch break,” or something like that, they can just schedule it and do it from their office.

I think it’s been a good thing for patients and hopefully is cutting down costs for them.