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.
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.
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.
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.
Agreed, I feel that it helps focus the conversation, and then you just know you’ve covered everything that’s concerned to you.
The Patient Empowerment Network (PEN) is fostering change toward achieving equitable healthcare for all. One resource, the Myeloma TelemEDucation Empowerment Resource Center is to significantly improve multiple myeloma patients’ and caregivers’ familiarity with remote access to healthcare, and thus increase quality of care regardless of geographical location. This one-of-a-kind resource center is intended to educate the myeloma community on the practical usage of telemedicine tools, to humanize patient and provider experiences.
Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to myeloma patients and to aid in receiving optimal care no matter virus limitations, where patients live, and other factors.
Benefits and Limitations of Telemedicine Visits
There are both benefits and limitations of telemedicine visits. Some benefits of telehealth include:
- Telemedicine allows care providers the opportunity to determine when myeloma patients really need to be seen in-person.
- Standard of care and maintenance treatment are usually a good fit for using some telemedicine visits in clinical trials.
- The option to get laboratory work done closer to home is a benefit for saving travel time and from taking time off of work and also lessens patient exposure to viruses.
- Telehealth allows care providers the opportunity to meet family members of some patients who can’t make it to in-person visits and to get to know their patients on a more personal level.
- Care providers are now able to provide second opinions to patients in other parts of their state and even to some patients across the country.
Unfortunately, some limitations of telehealth include:
- Gauging toxicity and other things with new treatments are usually best done along with performing a physical exam.
- Some patients only have technology access to talk over the phone and don’t have access to use video due to their device or due to lack of Wi-Fi bandwidth.
- Physical examinations cannot be performed via telehealth visits.
- Some providers feel it’s more difficult to establish a bond with some patients and to have considerable discussions with then over telemedicine.
- Open and honest communication between patients and care providers is sometimes better served in-person.
How to Optimize a Telemedicine Visit
Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits are:
- Try to write down your questions for your doctor or care provider before your appointment to keep on track. Keep it next to you for easy access during your visit.
- If patients normally have a friend or loved one join or doctors have a nurse or pharmacist join for in-person visits, have them join your telemedicine visits to help take notes, to ask questions, and/or to provide answers or additional information.
- If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time to prevent rushing before your appointment. If possible, try to test the video conferencing tool with a friend or loved one a day or so ahead of your appointment.
- If there’s anything you don’t understand during the appointment, ask your doctor to explain it again – whether it’s medication instructions, test results, a new medical term, or anything else.
- If you feel like a treatment isn’t working well for you, ask your doctor about possible medication or dosage changes.
- Just like in-person doctor visits, your doctor or care provider may run a few minutes late. Try your best to remain flexible and to be patient.
Telemedicine and Multiple Myeloma Clinical Trials
To the surprise of some, telemedicine has taken a role in multiple myeloma clinical trials. Currently, and looking to the future, patients can expect:
- Telemedicine to continue as an option for follow-up visits along with in-person visits in clinical trials.
- Paperwork for clinical trials to be available to complete online for an easier process for joining clinical trials.
- Multiple myeloma clinical trials to provide optimal care through the use of both telemedicine and in-person visits.
- Telemedicine to provide more options for clinical trial access for those who live in remote areas.
- Multiple myeloma clinical trials for quality-of-life studies, engagement studies, educational studies, and possibly others to be available via telemedicine.
Financial Benefits of Telemedicine
Telemedicine has brought some financial benefits for multiple myeloma patients, including:
- Telemedicine saves the time and costs of traveling to appointments and can reduce or sometimes eliminate the need to take time off from work for an appointment.
- The option of connecting with your doctor via telemedicine can sometimes eliminate the need for costly urgent care visits.
- The use of telemedicine eliminates the need to find child care for patients and care partners with young children who couldn’t take them along to in-person doctor appointments.
Here are some helpful telemedicine terms to know:
- HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
- Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
- Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
- VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.
Now that telemedicine tools continue to increase in use and to be refined, multiple myeloma patients can feel hopeful about improved care and treatment ahead for patients. As a step in that direction, take advantage of the resources below and continue to visit the Myeloma TelemEDucation Empowerment Resource Center for informative content about multiple myeloma and telemedicine.
Resources for Telemedicine and Multiple Myeloma
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.
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.
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.
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.
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.
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
What are some ways that patients and providers can make the most of multiple myeloma telemedicine visits? Dr. Joseph Mikhael shares things that he has found helpful in interacting via telehealth visits with his patients and how he tries to approach different types of visits.
Dr. Joseph Mikhael:
Well, the best practices for telemedicine are really going to depend on the nature of the clinic, the way the provider likes to interact with their patients, and the way the patients like to interact with them. I think one of the beauties of the multiple platforms we have is that we can leverage them, that beautiful connection that we develop between a physician or a provider and their patient, we can continue obviously not to the same extent that using electronic means, and so I’ve really tried to make sure that I don’t look at this as a half visit or as a partial visit.
I think psychologically is my first important tip that we look at this as another very important physician-patient interaction. Secondly, I try to make sure that my patients are comfortable with this modality, that we’ve had time to work through the technology, so we’re not worrying about who’s on mute, who’s not on mute, so that when we discuss things, we can discuss things properly, and that thirdly, we as much as possible, try to engage a full visit, whether a family member is going to be with the patient, whether a nurse practitioner, a nurse or pharmacist is going to join me on this side, that we really try to reproduce what we know works well in the clinic.
So, that the patient can feel comfortable so that they can be heard, because sometimes it’s difficult when you’re on the other side of a computer or phone to really be heard.
So psychologically, being prepared for this and getting into the specifics of making sure we’re comfortable with the technology, and then thirdly, really as much as possible, trying to reproduce that magic that we feel like when we have a face-to-face interaction.
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.
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.
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.
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.
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.
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.
How much of a risk are medical appointments for multiple myeloma patients? Myeloma expert Dr. Sarah Holstein explains infection risks of infusion appointments versus clinic visits – and shares how she’s helped to ensure safe visits for her patients.
Dr. Sarah Holstein
So, I think the risk associated with going in to get your blood drawn is probably quite low. All health care providers are going to be masked. The time that is spent getting the blood actually drawn is quite low and generally are in and out. So, for what I’ve tried to do for patients is of course to minimize unnecessary lab draws and if possible, try to coordinate them with other tests that are being done that day or other visits that are being done that day, and the infusion appointments, of course are necessary. But again, I think the risk of going to an infusion appointment is quite low, where I think the risk gets a little bit higher is when you’re sitting in waiting rooms of clinics and some people are slipping their masks off to drink coffee or to do other things, like that. And so, on my end, what I’ve tried to do to reduce risk is to utilize telehealth appointments as much as possible so that patients aren’t spending time in waiting rooms, but again, some of the necessary evils are just that you have to get some labs drawn to make sure that it’s safe to administer chemotherapy to make sure that the treatment is working, and you also have to go to infusion appointments.
I will say I’m pretty strict about masking, so if I have a patient perhaps come in for an in-person visit and it’s the type of mask where it’s slipping off of their face as they’re talking, and we’ve all experienced those types of masks that fit fine until you actually start talking. I’ll get a replacement mask for them to really make sure that everybody, the healthcare providers, the team as well as the patient, and if there’s a family member with them or a safest can be, and that includes wearing a properly-fitting mask.
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.
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.