MPN Specialized Care and Technology: Digital Health and Symptom Management

MPN Specialized Care and Technology: Digital Health and Symptom Management from Patient Empowerment Network on Vimeo.

Nearly 80% of patients living with a myeloproliferative neoplasm (MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Dr. Krisstina Gowin and Dr. AnaMaria Lopez discuss technological interventions in MPN symptom management, telemedicine limitations and the importance of connecting with an MPN specialist. 

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Transcript:

Lisa Hatfield: 

Welcome to this Patient Empowerment Network Program, I’m your host Lisa Hatfield. In this unique program, we explore cancer care and technology, specifically the importance of specialized care in myeloproliferative neoplasms, MPNs for short, and the role of digital health in symptom management. Today, I’m joined by two incredible experts, Dr. Krisstina Gowin is a hematologist, oncologist treating MPNs. I’m gonna shorten that, simplify it, treating MPNs. Dr. Gowin is Assistant Professor of Medicine at the University of Arizona. And Dr. Gowin it’s such a pleasure to connect with you.

Dr. Krisstina Gowin

Oh, it’s such an honor to be on today and connect with you all. Thank you so much for having me.

Lisa Hatfield: 

Also joining us is respected oncologist, Dr AnaMaria Lopez, Professor of Medical Oncology at Sidney Kimmel Cancer Centre, Thomas Jefferson University. Dr Lopez is a telemedicine pioneer as the founding medical director of the Arizona Telemedicine Program. Welcome, Dr Lopez, thank you for being here.

Dr. AnaMaria Lopez: 

Thank you so much. So looking forward to the discussion.

Lisa Hatfield: Thank you. So, Dr Lopez, I’d like to start with you to talk about cancer care and technology and how far we’ve come with technology and cancer care. We’ve made a fair number of strides in cancer care as they relate to digital health. Can you speak to that a bit?

Dr. AnaMaria Lopez:

Sure. I always say that the COVID pandemic allowed us to advance telehealth in a couple of months what probably would have taken 70 years. So we went from maybe 10% of the visits being done through tele to 90% plus. So a huge, huge change, and a lot of lessons learned, both in the, how do we do it clinically as well as how do we integrate this? How do we integrate this into clinical trials and to move beyond? We really thought telemedicine and really thinking telehealth because there are so many technologies, so there could be monitors, there could be… A lot of us were doing work in patient-recorded outcomes, how do you integrate that? How do you make it easy for patients to use this? And maybe it’s not simply the patient, but it’s also the patient and the caregiver who can help with this reporting. What are really the implementation efforts that need to be done? I could go on and on because there are so many lessons learned and it really shook things up. So people are thinking of this as a new technological revolution. So technology plays a big role in care and certainly a very big role in cancer care.

Lisa Hatfield:

And just out of curiosity, Dr Lopez, do you have a lot of your patients who still continue to see you via digital health or telehealth, who prefer that?

Dr. Krisstina Gowin:

Yes. Yeah. For example, in some of the psychiatry literature, which I think is a little bit unexpected ’cause you think psychiatry is such an intimate interaction. Well a lot of patients actually feel safer when it’s digital, when it’s through tele. So yeah, I do. And we were talking earlier about doing integrative medicine, and almost all of my integrative medicine patients, we do at a distance. I really think of it as it’s a way to bring back the house call.

Lisa Hatfield:

Yes. Well, thank you for that overview, Dr Lopez. So the pandemic has resulted in significant changes to many aspects of daily living for many of us, but for patients living with cancer like myself, there are different realities that we’ve had to deal with. Do we go in for our monthly blood draws, or do we wait a couple of months? So question for Dr Gowin, can you give us an overview of the impact that Covid-19 has had on MPNs or MPN care?

Dr. Krisstina Gowin:

Absolutely. Well, there was a really wonderful study that was done, really led out of Mayo, by Jeanne Palmer and Ruben Mesa, and it was an international study, and it looked at 1500 MPN patients. And they asked questions like, how many of you are actually having telemedicine? And this was in 2020, kind of at the beginning. And over half of them had already been engaging in telemedicine. And about a quarter of them felt that their care actually was delayed a little bit and that there were actually consequences to that delay, so that really speaks to an international kind of change in the paradigm of how we’re delivering care for MPN patients. The other thing is the lockdowns, the lockdowns that were occurring for us here in the US and really internationally. And what they did is, they asked patients their MPN symptom burden, and those that were on lockdown, not surprisingly I think to all of us, had a significantly higher symptom burden.

So I think that really speaks to that A, yes, there was a very large impact of COVID on the development of telemedicine and the need for telemedicine. But it also underscores the need for symptom management that we now have a group of patients that are having a higher symptom burden, probably likely secondary to more sedentary behavior, more anxiety, more depression, but a higher symptom burden because of COVID. And so we really need not only more therapeutics and perhaps non-pharmacologic interventions to support their symptom burden, but it needs to be delivered on a digital platform.

Lisa Hatfield:

Thank you for that, Dr. Gowin. So you brought up a really good point, and this is a great segue to talk about integrative health. So I have multiple myeloma, and of course that comes with side effects from the different therapies and symptoms of their own. We have a great integrative health center at our cancer center here locally where I live, and I’ve used it for acupuncture for some of my symptom management. I’ve also watched you on different platforms, through webinars and patient support groups where you describe different integrative health techniques and that type of thing. So I’m wondering… Two questions. The first part is, what symptoms do MPN patients face the most? And then how can they use integrative health to do that, particularly as it relates to telemedicine? Are there telemedicine options for integrative health? I suppose things like acupuncture, maybe not, but other types of integrative health, and can they get a consult for integrative health? Can they even go as far as getting a consult? So if you can answer those questions, the symptoms they face, how to use integrative health, and if they can get a consult for integrative health, that would be great. We’d appreciate that.

Dr. Krisstina Gowin:

Yeah. Well, Lisa, I wanna take a moment just to validate your journey that you’re going through and to congratulate you for your self-advocacy to go look for those integrative therapies to support yourself. And for MPN patients, I will say that it’s a really unique group, and so all cancer patients experience symptoms, but in myeloproliferative neoplasms, it’s really kind of this heterogeneous what we call a symptom burden. And so most patients will experience fatigue about 80% of MPN patients. But then beyond that, there’s really a whole slew of different sequelae that can be associated with the disease, which you may or may not think about when you’re thinking about MPNs, such as psychosocial issues, sleep issues, sexual issues.

And then we have kind of the classical issues that happen with MPNs, such as dizziness, but we talked about the fatigue, bone pain, itching, abdominal discomfort from an enlarged spleen and early satiety, or feeling full quickly. It’s really a huge symptom complex, if you will. And we now have validated measurement tools to better understand those. It’s the MPN symptom assessment form, which has really, I think, revolutionized how we look at MPN. It’s no longer just treating the blood counts. We’re treating the patient as a whole, and even within our NCCN guidelines, kind of how we as oncologists go through the algorithms of how to change therapy and how we look at patients. We now have symptoms in there. So even if blood counts are controlled, we may change therapies or even do a bone marrow based on symptoms alone. So symptoms are a huge thing in MPN. So getting to your second question for integrative health.

So I think that MPN… The patients in the community are really early adopters for digital engagement, which is fantastic. Everyone’s very engaged and I’ve had the opportunity to work on meditation apps, yoga apps, a wellness based app here from the University of Arizona, and patients just really accrue fast. Everyone’s so excited. And most of these, though, were very small kind of pilot trials, looking at feasibility, can’t we really do these things? But most of them as well are showing some impacts on depression, anxiety, sleep, and total symptom burden. So I do think that these modalities through digital platforms certainly can make a difference on the symptoms. And we’ve seen that with meditation. We’ve seen it with yoga and we’ve seen it with a seven domain wellness app. And is it the digital engagement? I don’t think so.

I think it’s likely the integrative therapies that they’re receiving through that platform, right? We know meditation works, we know yoga works, perhaps not so well in MPNs. We need to build that evidence base, but other solid cancers, we know those interventions really work. But it’s wonderful to get that kind of early data, say it not only works, but it also works when you’re doing it at home, when you’re doing it on a digital platform. And so I would encourage all patients listening to this to, yes, look at what’s around you, what are the resources, what are the clinical trials? Looking at these different digital modalities for integrative medicine, but also to go get an integrative consultation.

And as Dr. Lopez already had mentioned, she does all of her integrative medicine via telemedicine now, which is fantastic. And so you, it’s really, it’s that you know, your fingertips. You now have access to wonderful oncologists like Dr. Lopez to guide you in this journey. And the journey is not only allopathic western medicine, but it’s treating you as a person, you as a whole symptom complex. And that’s really what integrative medicine aims to support you through.

Lisa Hatfield:

Thank you for that. Dr. Gowin. So you talked about an app that patients can use. Is this app accessible to any patient or is it just within a trial or a study that you’ve done?

Dr. Krisstina Gowin:

No, it is widely accessible. It is free, even better. [laughter], it’s called my Wellness Coach. And that’s…

Lisa Hatfield:

I’m writing that down. Okay. [laughter]

Dr. Krisstina Gowin:

Yeah. Yeah. It’s really wonderful. Many domains of wellness. It’s based on motivational interviewing and smart goals. It gives you little reminders of, hey, and you set your own goals, which is wonderful.

Lisa Hatfield:

And what types of interventions then does that contain? Does it have things like you said, meditation and does it have a yoga program for patients? Or what types of interventions?

Dr. Krisstina Gowin:

Not quite yet. I think that that’s what we aspire to is really this multidimensional intervention. It’s not really an intervention. It’s looking at your life. It’s saying, “what are you eating? What are your nutrition goals? How are you moving? What are your exercise goals?”

How is your resiliency? How is your spiritual health? How are your relationships? And so it’s asking all of these domains of what our wellness is and helps to identify where perhaps you would like to devote more time and energy to, and also gives some resources and education around each of those domains and why they’re so important. But you set your own goals and then…

Lisa Hatfield:

That’s great.

Dr. Krisstina Gowin:

You’re accountable for your goals.

Lisa Hatfield:

Great. Well, thank you so much for that information. And you mentioned that Dr. Lopez also does her integrative health via telemedicine. So I’m gonna ask Dr. Lopez, can you speak to that a little bit more? How do you do that with patients? Do they just contact you and set up an appointment for an integrative health consult or appointment? And do you conduct some of that yourself or do you send them to particular resources in the community?

Dr. AnaMaria Lopez:

Sure. So, yes, patients can make an integrative oncology appointment directly. I really like to do the consults through tele simply because I can… As I was mentioning, it’s like a virtual house call to really get a sense of the patient. Often a partner, significant other, caregiver might be present as well and as we know there’s the survivor and there’s the co-survivor. So including both can be very helpful to some people and I think the initial intake… Again as Dr. Gowin was saying it depends so much on what the person wants to do. So the first opportunity for coming together is simply, where are you? What are your goals? What’s important to you? And of the panoply of options, which might be the easiest or the one that you are most interested in.

And so depending on what it is we might work together, we might also bring in others if the person is really interested in making lifestyle changes, let’s say related to nutrition. The person might work closely with a nutritionist for some period of time and then come back and we’d come together and reassess. You mentioned the acupuncture and you can’t do acupuncture at a distance, but you can certainly teach people about the points and consider acupressure for certain points. So there’s so many ways to engage and interact, but yes, I think like a lot of medicine, it’s a team-based approach.

Lisa Hatfield:

Great, thank you. Dr. Lopez. I do have to say with acupuncture, one of the side effects of a lot of the cancer medications is neuropathy. And a lot of patients like myself try every option, every pharmacological option, whether it’s gabapentin or something else, and they don’t work an acupuncture for me anyway, personally. I had a significant reduction in the painful neuropathy… Not so much in the tingling, but a significant reduction that, so I am very strong advocate for integrative health. So thank you for explaining that a bit more and as long as we have you on Dr. Lopez, can you also speak more broadly to innovative telehealth tools that are making an impact on symptom management and overall cancer care?

Dr. AnaMaria Lopez:

Sure. So one of the things that we know, is that for example, people have appointments every three weeks, or they have appointments once a month with the oncologist, and a lot can happen in that time. So setting up systems that are assisted by technology, so that patients can report their symptoms in real time can be very helpful. And some of this may require… It may not be a common way where the person may be familiar going to a computer or going to their phone to kind of say, “This is how I’m feeling.” So that may require some engagement education, but often regardless of age, regardless of background, people find that really easy and find that so helpful to be able to say, “Oh, was it two weeks ago that I had that?” As opposed to just saying, “Hey, I just had this,” and then it can happen anytime day or night that the patient can report. And that way there’s… It’s just so helpful to have an intervention in real time.

The other part that’s good is that often some of these systems can kind of track. So we can look at it together and say, “You know what? Your fatigue tends to be a couple of weeks after therapy, so how can we either prepare for that?” Or just to have the reassurance that, “Yes you have that depth, but it gets better and you get through it.” So being able to look retrospectively and identify that can be helpful and I think also just the ease for people to be able to connect with multiple specialists, sometimes to have multidisciplinary visits where not only does the patient meet with everyone, but the patient can see that we are all meeting and interacting together. So all of those are incredible tools, one of my favorites though, one of my favorites is patients who are in the hospital and patients who are in the hospital a long time, on some occasions. So and even if a person’s not there a long time, it can feel like a long time, so to use the technology, not just to connect the patient, the healthcare team, but to use the technology to connect the patient with his or her family. And I think especially… I mean, a lot of people have smartphones, but it’s using your minutes, sometimes the internet may not be so strong. So to use the technology that would be used for the clinical piece to have that available in the inpatient setting so that patients can feel connected.

Lisa Hatfield:

Yeah, that’s a really great thought that you brought up, too. I know when the pandemic was in full swing, but patients were starting to go back into the office to see their provider. For me, I was not allowed to take my husband in with me, so I went in alone. I was far enough along in my journey. I didn’t necessarily need a care partner with me, but some patients do, maybe a newly diagnosed patient. So that is a really great point. Say, a patient has to come in by himself or herself, is that a technology they can use? Are you willing to let them use their phone to maybe FaceTime during that call or we had to use the actual physical landline because my phone did not connect, the signal wasn’t strong enough. But do you allow that during your appointments to have patients contact somebody?

Dr. AnaMaria Lopez:

Absolutely.

Lisa Hatfield:

Okay. That’s great. Yeah.

Dr. AnaMaria Lopez:

And also there’s pandemic, but there’s also… People live everywhere. So you could say their sun could be in California and I’m in Philadelphia and this way it’s okay, we’ll just beam them in.

Lisa Hatfield:

Yes. Well, thank you for that information. And some patients might be a little more reluctant to use telehealth or telemedicine. How can patients and their care partners feel more confident in voicing their concerns or communicating with their healthcare teams regarding any telemedicine options that are out there?

Dr. AnaMaria Lopez:

So you mentioned that I had been the founding medical director of the Arizona Telemedicine Program, and it was such a wonderful experience because skepticism and I really respected that. It was brand new and we had our system in the library. And the library, it was down in the basement, so it was very metaphorical. I would meet the new clinician at the entrance of the library. We would walk down the stairs together and often, the conversation was, “Okay, I’m doing this for you. I’m doing it one time. We’ll see how it goes.” And I was always so reassuring that if for some reason,’cause ultimately the clinician needs to feel comfortable, yes, this works, or no, it doesn’t. And if you have any doubt and you feel that you need to see the patient in person, you just need to say that, I need to see the patient in person. And inevitably as we’re walking up the stairs, “Oh, I know you called me because I was on call. Just call me anytime. Don’t call the on-call person”. This was great. I loved it.

So inevitably, people really like it and it’s good. You see the patient in their own environment, you can interact. You often get insights that you may not have gotten otherwise just because of where you are and how comfortable they feel in their own space. So I think, for me it’s the proofs in the pudding. Give people the opportunity, have the right supports and technology in place and often it’s a very positive experience.

Lisa Hatfield:

Great. Thank you Dr. Lopez. So Dr. Gowin, a couple of questions for you. Is technology playing a role in accelerating progress in MPN care?

Dr. Krisstina Gowin:

Oh, absolutely. And I think some of the ways that it really accelerates progress is pulling us together. So what we need to recognize is that myeloproliferative neoplasms truly is a rare disease and we just celebrated Rare Disease day. But there’s a lot of challenge in treating patients and progressing the field forward in rare diseases because you can’t do the big clinical trials. It’s hard to come together ’cause everything’s siloed and there’s just a couple patients here, a couple patients there in each practice. But with digital health and clinical trials that are offered on a digital platform, it pulls the nation together and even the world together. And we’ve seen that. I’ve done a international survey-based analysis and I had 858 MPN patients from 52 countries participate in that survey. And so that just shows how it pulls the world together. And for the web app that we just discussed, we had 93 patients say they were interested within three weeks, and within actually a week, we identified them all and then took three weeks to actually accrue them to the trial. So it really speaks to A, how MPN patients are digitally engaged and excited about these kinds of platforms. And then B, how effective it really can be to pull the groups together.

So yes, I think it’s… And that’s really how we’re gonna get progress is through these kind of interventions with a rare disease. And I hope it’s okay if we jump back to something you said, Dr. Lopez, which is, I think telemedicine is so so important to bring everyone together. And in particular, I see that on the transplant ward. And so in myelofibrosis, that’s the only curative therapy. And so many myelofibrosis patients actually go through allogeneic stem cell transplantation. And my goodness, that is a socially isolating experience. Patients are in the hospital, not uncommonly for at least 30 days and then have to be near their transplant center for three months, which often is away from home. So to pull in their support system, both through the acuity of the transplant themselves and then the couple of months after is so crucial to a successful transplantation. And I think through FaceTime and also the MPN support groups, which is very robust, the patient advocacy and the way the MPN network sticks together on a digital platform, I think is really unique and offers unique support.

Lisa Hatfield:

Thank you. And then what role does technology play in the disease symptom management, and in particular, in clinical trials too. What role does technology play with clinical trials?

Dr. Krisstina Gowin:

Well, I think it helps us through different, clinical trial accrual patterns, we can see who’s eligible where, so it helps us identify patients. It helps us to, understand the different kind of precision based medicine approaches so we can start to pool the data, say for, particular mutations… ASXL1 mutations. And so it helps us in the precision medicine aspect of clinical trials and now we’re looking at symptom management and how do we really integrate that. So large survivorship platforms like Carevive, if you’ve ever heard of Carevive, is now integrating our validated symptom assessment form into the Carevive platform. So now we can really collect that data and use that to mine it for potential kind of retrospective analysis. So it’s helpful for clinical trials as well as for our clinicians and clinics to really identify changes in symptom burden.

And just as Dr. Lopez was mentioning, that we can track these over time and it can flag and say, “Oh, your symptoms are changing, they’re increasing over time,” and maybe we need to be thinking about that. And so Carevive is really kind of a electronic medical record driven it’s really a healthcare driven platform, but now there’s patient ones too. And I just learned about this two weeks ago, I was at an MPN conference in Phoenix and learned about MPN Genie. And so MPN Genie apparently is tracking… Patients are putting their symptoms in and that’s shooting that information to the electronic medical record to their doctors. And so I think that’s fantastic, ’cause, we now get that information real time and we can change our clinical management, maybe bring that patient in sooner, maybe do a bone marrow earlier. We never would’ve identified that if it weren’t for those kind of digital engagements, so I think it’s a really exciting time. And I think we’re gonna see more and more of these new platforms and ways for different EMRs and smartphones to be communicating back and forth between patients and providers.

Lisa Hatfield:

Great. That MPN Genie is fascinating to me that we can have that real-time communication going back and forth as a patient, I would love that. So going back to clinical trials, I’m curious if you think that, technology has progressed enough, so in the past… Say I’m an MPN patient or a myeloma patient, I see a clinical trial or hear about one, I have to be onsite for that clinical trial for monitoring maybe for six months to a year. Do you think that technology has progressed enough that clinical trials might allow a patient to be at home, maybe in a more remote area and monitored remotely? Whereas in the past, that same clinical trial required them to be at the facility? Do you think that we’ve progressed to that point in some clinical trials?

Dr. Krisstina Gowin:

You bet. Yeah. I think COVID out of necessity has forced us to do that. And I have in my own clinical trials, even with pharmacologic clinical trials conducted telemedicine visits that were approved by the sponsor. So the paradigm is shifting, and particularly when it is oral therapeutics, I think that’s really accessible when they’re, IV subcutaneous, I think that has different challenges. Obviously you can’t do that as remote, but when they’re oral therapeutics are non-pharmacologic intervention, such as our integrative interventions, I think it really lands well to a more remote experience.

Lisa Hatfield:

Okay. And then would that require communication between the local oncologist and maybe someone like yourself, the investigator on that clinical trial to know what is going on with that particular patient? I assume that that communication would be ongoing?

Dr. Krisstina Gowin:

Absolutely. Always.

Lisa Hatfield:

Okay. Yeah. All right, great. Well, thank you for that information. So, Dr. Lopez, kind of a similar question for you. What are some examples of how technology is influencing cancer care right now?

Dr. AnaMaria Lopez:

Yeah, let me just add on the clinical trial question.

Lisa Hatfield:

Oh, Yes.

Dr. AnaMaria Lopez:

That there’s also the opportunity. Again, there were so many things that we thought, “Oh no, we just can’t be done.” But because of the necessity, necessity is the mother of invention, we do remote consent, so that was a big deal in the past. We can also do a tele visit ahead of the appointment, and screen for the cancer clinical trials, people travel large distances for studies and instead of traveling four or five hours, and then to be told, “Oh, actually you don’t meet the criteria.” To be able to do all of that at a distance, to get the records, to get the images, to review all that needs to be reviewed. And then to say yes, and not only yes, but we can also do your consent at a distance in some situations.

And then when you come, there’s actually the more substantive, perhaps even the treatment. There’s also a large, movement around hospital at home and that these patients that are eligible for that would be able… With digital support, be able to get hospital level care in some cases at home. So some of that may involve infusion, some of that… Again, but that visual connectivity and in the past you really had to kind of conceptualize it and it was kind of space aging to talk about it. But we now, we’ve all done FaceTime, so I think we all really can understand what it entails, so tremendous shifts and, we wanna try to keep that momentum going for our patients. So, I do think that, there’s so many ways that technology has impacted cancer care, even when we talk about the electronic record and patients accessing the electronic record and patients having the opportunity to go into a portal and to see their labs, to see their reports…

To be able to track their changes. All of that is really, really powerful. You know, patients with… The most common I think is patients with diabetes who track their blood sugar sometimes to the minute and they can say, “Oh, I ate that and now I see the impact.” So the opportunity for monitoring, the opportunity for also bringing in experts. So let’s say there’s a patient with a rare disease and the expert is elsewhere, there might be the opportunity to bring people together. We do tumor boards. That’s just part of what we do in cancer care. And also as many… There are health systems now so that it’s not one hospital, it’s multiple hospitals together where we can bring all of those folks together, bring in local expertise, regional expertise, national expertise, all for the patient’s benefit.

So there are so many ways that technology even something as simple as the note. Now this is something we experimented with and it’s still in experimentation phase, but there were these Google classes where you could interact with the patient and as I’m talking, the Google glass would record kind of the conversation and would come up with some sort of a structure for the note. So for what that encounter had been like. So there are lots of ways of how do you capture natural language in real time to really help the workflow, the documentation process. So I think there’s aspects to help the patient, to help the families, to help the clinical teams and to help everybody work together.

Lisa Hatfield:

Great. Thank you. And you talked about the patient portal and I’m one of those patients at fault of seeing a lab result before my doctor saw it and calling him or sending a message via MyChart saying, “Hey, this is going up. What’s wrong with this?” So I’m sure you don’t have to mention any names. I’m sure you’ve seen the challenges of, digital health too, are having that patient portable or portal accessible to patients. So anyway, just wanted to throw that out there that I’m sure that brings challenges to you. Also few little challenges here and there.

Dr. AnaMaria Lopez:

But at the same time, that’s so good, right? It’s so good that patients are engaged. It’s so good that you’re engaged. And I think as long as, we’re communicating that yes, you may see this before me, so you may have questions and then, we just get together and answer the questions.

Lisa Hatfield:

And thank you for saying that Dr. Lopez, because a lot of us patients who do that occasionally feel a little bit guilty for sending a note right away to our doctors. “We know you’re busy. We know you’ve already, you’ll look at those labs. If you’re concerned, you’ll call us or let us know”. And sometimes we jump the gun a little bit. So thank you for reassuring us that that’s okay, that that’s okay to do that. So we appreciate that. So Dr. Gowin, do you have anything to add on, how MPN care or just cancer care in general could change with different technologies? We didn’t touch a lot on things like artificial intelligence and that type of thing, and we can speak to that or, any other type of technology that you’re familiar with.

Dr. Krisstina Gowin:

Well, I think the artificial intelligence aspect is really going to change the paradigm again on how we’re designing, studies. And I think one of the biggest challenges that we have in myeloma and as well as myeloproliferative neoplasms, is to think about how do we optimally sequence our therapies to achieve best survival, right? And I think this is a wonderful problem to have. We have now not only one JAK inhibitor on the market, but several and more in the pipeline and several other therapeutic targets. And so now the question is which therapy and when do we employ it? So things like artificial intelligence will help us to answer that question with machine learning decision tree analysis, all of that is going to be answered through those kind of platforms. And so I think that is going to be a shift we will see in the next five years is many different machine-based learning algorithms to better understand those problems we cannot have tackled traditionally otherwise.

Sensors though is another one, right? And so a big thing in MPNs is not only addressing the blood counts and reducing risk of thrombosis, and to address symptom burden, but it’s really addressing lifestyle because it’s things like cardiovascular disease, stroke that really we’re worried about as some of the sequelae of having the disease and what we’re trying to prevent with therapeutics. And so even going back to this NCCN guidelines, it’s addressing cardiovascular risk factors as part of our core treatment goals. And so how do we really do that? And it’s really through lifestyle medicine and that’s where the sensors come in. And so now we have, these Fitbits and smartphones that connect to our Apple watches and we have Garmins and all these wonderful devices that are prompting us to move more, prompting us to be cognizant of our heart rate and stress response prompting us to meditate. And so I can envision those evolving over time and connecting to the EMR and being very seamlessly interwoven into our clinical trials. And we’re already doing that. In fact, we’re talking about doing one very soon in MPN patients. And so I think the sensors are gonna be another big way that we’re going to be integrating, into our clinical trials and symptom management tools.

Lisa Hatfield:

That’s fascinating. Thank you for that. And Dr. Lopez, do you have anything to add about other technologies and how they may affect cancer care in the future?

Dr. AnaMaria Lopez:

Sure. When Dr. Gowin mentioned the sensors, it just reminded me, we’re building this new building, patient care building and oncology will be there. And I did a tour recently, and we’re used to going to the doctor, you stop in, they get your blood pressure, they get your weight, et cetera. Here, you’ll walk in directly to your exam room and you check in at a kiosk, so you just kinda check in [chuckle] with a little robot kiosk, and then it’ll tell you where you’re going. You’ll go to Room 3, let’s say, and Room 3 will say, “Welcome, Lisa.” [chuckle] And so you know that you’re in the right place. And you’ll walk in, there’s your gown, you’ll sit in the exam chair, and the exam chair automatically is gonna take your vital signs. So it just seems, really these built-in aspects to the technology. And one of the things, again, what I just love about this work is that it’s a very interdisciplinary, multidisciplinary. And one of the projects that we were working on, which it ties into this, when I was in Arizona with the telemedicine program is we worked with the College of Architecture and with this concept of smart buildings.

So it’s kinda like that. Why should you do these different sensors that detect, but that it could also detect. You might walk into the room and you might be really nervous as you might be really cold, and it would detect that and it would warm the room for you. Or you might be coming in and be having hot flashes and it would just cool the room for you. So the technology has so much potential to really improve the patient experience.

Lisa Hatfield:

And that’s amazing to me. I think that would be incredible to walk into a building to have that experience, as long as it doesn’t take away the compassion and care I get from my providers. I am so fortunate to have extraordinary providers, so I don’t think it will ever take over that aspect of it, I think that is a fear people have, especially with artificial intelligence and that type of thing, I think it can only go so far. Can’t provide the humanness that’s required for patient care, so yeah.

Dr. AnaMaria Lopez:

Yeah. These are tools.

Lisa Hatfield:

Yes, that it. Great, well, thank you very much. Dr. Gowin, can you provide or share some examples of how telemedicine is influencing personalized medicine and MPN care, and how can MPN patients best advocate for themselves to get the latest in MPN care?

Dr. Krisstina Gowin:

Well, I think it’s going back to some of the conversations we’ve already had, is that now with telemedicine, you can really access academic centers no matter where you are. And so rural areas now can go to academic centers, very accessible without travel, and so what that lends to is more access to precision-based clinical trials, and very often now we’re doing next generation sequencing panels for patients with MPN. We’re looking at what are the genetic features of the disease and we may be accruing trials based on those genetic features. And so that kind of conversation really only happens at academic centers, and so I think it’s really allowing those that live far away, a few hours away, to really have those personalized and precision-based conversations. And then tying in again the aspect of integrative medicine. And then what is integrative medicine all about is personalizing your treatment plan, asking what are your goals, what is your lifestyle, what is your culture, and how do we really get you on a plan that makes sense for you, that is local for you and sustainable for you to really achieve your optimum wellness?

And so if I were counseling patients listening to this, I would say, start with the in-state academic centers and say, “What are the telemedicine services there? Is there an integrative medicine department there”? And then get a quarterback within that department and say, “Okay, this is the plan”, and then that quarterback can say, “Well, now let’s look local. What do you have? What are your resources there? Let me do some homework with you and hook you up with really evidence-based high quality providers to achieve your personalized needs in your local community”. And I think that’s how we’re really going to get all of our patients in a precision and personalized approach no matter where they live, and that’s again, the beauty of telemedicine and digital health.

Lisa Hatfield:

Great, thank you, Dr. Gowin. And I know we’ve spoken, both you and Dr. Lopez have spoken to all of the rewards of telehealth. Are there any risks or drawbacks that you see to telehealth or telemedicine for digital health?

Dr. AnaMaria Lopez:

The most important thing is to remember that the technology is a tool, and if the person feels that there’s a limitation, so for example, if the patient is seen and they say their heart is racing or skipping beats or something, now, there are ways, there are electronic stethoscope, so you can really do a full exam except for palpation through telemedicine. But not everybody has that even in a clinic, but certainly in our own home, we don’t have that technology. So if a patient is expressing a concern for which the clinician really feels that needs a closer evaluation, then that’s the right next step, so we’re not… The technology is a tool to help us care for people, and if it’s not all available right there, then we need to see the patient in person. So I think that’s the risk is just sometimes people may feel limited like, “Oh, well, I’m not really sure.” It’s okay, I’m not really sure I need to see you, or you need to go here or go there for the care.

And the other, which is a really big threat, is that part of the reason we did 70 years work in a couple months is because it was reimbursed and we’re reaching the end of the pandemic, the federal… And with that, the payers may go backwards. We all know that if that happens, we will go backwards in telemedicine. [chuckle] There will just be decreased, decrease use. And it may lead to people then going back to traveling four hours, waiting, only to be told, “Oh, you know what? There’s not this. This clinical trial doesn’t work for you.” So we don’t want to lose ground. And part of not losing ground is that we really need to continue to have advocacy around reimbursement.

Lisa Hatfield:

Thank you, Dr. Lopez. And I feel compelled, just to follow up with one more question regarding that, because I’m very passionate about this. With some of these rules and guidelines coming to an end, I know in my particular state that I will no longer be able to access my specialist. I see a myeloma specialist. We do not have any here locally. I can access a specialist via telemedicine. I will not have that opportunity. So as all of us know, there are disparities and there are financial disparities in cancer patients. There are racial disparities in cancer patients, there are socioeconomic disparities. Telemedicine has been a tremendous… Has had a tremendous impact on the care and the outcomes and the quality of life of so many patients. So as a patient and as an advocate, do you have any recommendations? Do I go to my doctor and say, “Okay, how can I move forward and still talk to my specialist, who’s out of state? Do I go to my state legislature? Do I talk to my insurance company? How can we get this to continue?” Because this has had such a significant impact on the quality of life and on the outcomes for patients, who otherwise, would not have been able to access that care.

Dr. AnaMaria Lopez:

Yeah, I mean, I think all of the above. Partnering with other advocates, the American Telemedicine Association has a map that kind of says where are all the shifting sands regarding the different rules and legislative changes. But I think it’s led us to a place, where we are all advocates and where physicians, nurses, patients, pharmacists, everybody in the same way that we do team-based care, that we do team-based advocacy and it’s all for our patients.

Lisa Hatfield:

Great. Thank you for that. Dr. Gowin, any last words that you may have about accessing specialists or telemedicine options?

Dr. Krisstina Gowin:

Well, I think we covered the basics, but I just wanna end with just how empowering the access to digital health interventions really is. And so I don’t think there is a one size fits all approach to every patient. So what I would encourage patients to do is just to really think, “How do I compliment my care? What am I missing? How do I achieve my best wellness? And how do I get those resources in my home to make them more convenient for me?” And to start doing some research and self-advocacy to really get those resources ’cause they are out there and in almost… In every domain, there is now a digital version that is accessible to you now.

Lisa Hatfield:

Thank you for that. So it is time to wrap up our program. I could ask you many more questions. From a patient perspective, it has been so refreshing to take a minute to understand how far we’ve come and to have a look at the exciting innovations ahead. As always, we appreciate all the new tools being added to the toolbox, and I am eternally grateful for Dr. Gowin and Dr. Lopez and all providers who are willing to come on these webinars and answer questions from patients. It is so empowering to us, and we’re so appreciative of your time and your energy and your expertise. So thank you so much for being here today. And just a reminder to all patients, to always consult with your medical team about what is right for you. Thank you again so much to Dr. Lopez and Dr. Gowin for joining us for this Patient Empowerment Network program. I’m Lisa Hatfield. Thank you.


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MPN Specialized Care and Technology: The Ongoing Role of Telemedicine

MPN Specialized Care and Technology: The Ongoing Role of Telemedicine from Patient Empowerment Network on Vimeo.

Why should MPN patients keep telemedicine in their toolbox post-COVID? How can patients and caregivers feel more confident in voicing concerns and communicating with their healthcare teams regarding telemedicine options? In this unique program, Drs. Jeanne Palmer and S. Joseph Sirintrapun discuss the impact of telemedicine on MPN care and technological tools accelerating the fight against cancer.

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Why Is Specialized Care Important for MPN Patients?

Transcript:

Lisa Hatfield: 

Hello and welcome to this Patient Empowerment Network program. I’m your host, Lisa Hatfield. And in this unique program, we are going to explore cancer care and technology, specifically the importance of specialized care in myeloproliferative neoplasms and the ongoing role of telemedicine. And just to abbreviate myeloproliferative neoplasms going forward, I think we’ll just use the acronym MPNs, it’s a little bit easier to say. So today, I’m joined by two incredible experts. Dr. Jeanne Palmer is a respected hematologist oncologist, treating MPNs at Mayo Clinic. Dr. Palmer’s a Program Director for the Blood and Marrow Transplant Program. And, Dr. Palmer, it’s really a pleasure to connect with you today. Thanks for being here.

Dr. Palmer: 

Thank you for having me. I always enjoy coming to these presentations and being able to share some knowledge.

Lisa Hatfield:

Awesome, great. Well, thank you. We also have joining us, Dr. Joseph Sirintrapun, a noted clinical informatics expert from Memorial Sloan Kettering Cancer Center. And for some of our audience members, this term informatics may be unfamiliar or new to you. So briefly, informatics integrates the worlds of medicine and technology, and, Dr. Sirintrapun, it’s really nice to connect with you also. This is something that I’ve been wanting to learn more about anyway, the merging of medicine and technology. So it’ll be great to talk with you today. Thank you.

Dr. Sirintrapun:

Well, thank you for having me, I appreciate it.

Lisa Hatfield:

Thank you. We’re going to have a real-time look at telemedicine. I like to start with the current landscape and the ever-changing yet ongoing role of telemedicine. So starting with, Dr. Palmer, how does telemedicine work, and how does an MPN patient ask for or access telemedicine? How do you do that at your center?

Dr. Palmer:

So telemedicine has been a real…one of the blessings that’s come out of this whole COVID pandemic because it put fast-forward on the development of it and certainly has opened a lot of doors. I think one of the beneficial things of telemedicine is in a disease like MPNs, these are very rare diseases, and there are not a lot of specialists in the country. So depending on where you live, there may or may not be somebody who specializes in this disease focus. So by having telemedicine, you can have access to a provider who has a higher level of specialty in that specific disease. I think this is really important for any rare disease, just because of the difficulty in finding specialists. Many of them are in urban areas. And so if you live in a rural area or somewhere outside of that specific zone, it can be very difficult to come and see a specialist. Additionally, it can be very costly.

If you look at the cost of the airfare and the lodging and everything else, I think of people coming to Scottsdale can pay an enormous amount of money just to come for two nights and to be able to see me. So the fact that we can do this via telemedicine, they can get the information, receive the education about the disease and help for maybe their local provider and managing it can make a huge difference in the quality of care.

Lisa Hatfield:

Great. Well, thank you. So from a practical perspective and if you have a newly diagnosed MPN patient and they wanted to get specialized care or talk to an expert, would they just call…would they just look up online and find a phone number and try to call your clinic? Or how would they get access maybe as an expert opinion from you, via telemedicine?

Dr. Palmer:

So as of right now, the best way to access it is if you go on to the Mayo Clinic website, there’s actually a referral phone number where people can self-refer for a consultation. Now, the changing part of this, the changing part of this landscape is that right now we’re still in the public health emergency. So a lot of the barriers between seeing patients in different states based on…because I have a license in Arizona, I don’t have a license in another state. That’s going to become a bit more challenging because of the fact that if the physician…like, for example, myself, if there’s a patient who wants an opinion who lives in Nebraska, I don’t have a Nebraska license. So therefore it would be a lot more challenging, because I can’t actually do an initial consultation via telemedicine once the public health emergency ends.

I think this is a really important thing that needs to be worked on, probably on more of a legislative level of trying to change some of the rules and laws associated with this. And something that I know there’s a number of people working on, but as of right now, and I think…I don’t remember when the public health emergency will be ending, but during the public health emergency, it’s just been a matter of just calling in like you’d normally try to get a consult. However, that will change and hopefully, as more awareness of telemedicine and some of its benefits are really understood that some of these laws can change and some of these processes can change so that they can allow people to get access to care they otherwise wouldn’t be able to receive.

Lisa Hatfield:

Yes, I appreciate that, and I will be a fierce advocate out there trying to have those telemedicine benefits continue, because I do come from a more rural state, so I appreciate those.

Dr. Sirintrapun:

Can I jump in?

Lisa Hatfield:

Yes, please do. Yeah.

Dr. Sirintrapun:

To help answer some of the points that Jeanne had brought up. The American Telemedicine Association works very hard in terms of looking at the same problem about the state laws, being able to be licensed and have ways to overcome state barriers, and then another one about the public health emergency…and it is true, I’ve been hearing that it’s going to end some time in a couple of months, so that’s one thing to keep in mind as well, and they’re going to have to look in terms of what to do afterwards. Because there’s a lot of things that patients enjoy, providers enjoy that they’ll have to continue that technically go away, but we don’t necessarily want to see that go and so these are the things that we’ll have to keep in mind moving forward after the public health emergency ends.

Lisa Hatfield:

I appreciate that, and I think you’re right, and I think that telemedicine has had… It can have a detrimental impact on outcomes for patients too, and to remove that would be devastating for some patients like myself. All right, so Dr. Palmer, the COVID pandemic has resulted in significant changes to many aspects of daily living for all of us, but for patients like myself who are living with cancer, there are different realities that we have to deal with, so can you give a brief overview of the impact that COVID-19 has had on MPNs.

Dr. Palmer:

So I think the impact of COVID-19, I think we just spoke about some of the favorable things that telemedicine became a real reality, some of the detrimental things, enrolling in clinical trials has been very, very difficult because of the fact that, number one, the public health emergency, some patients weren’t able to travel. And then number two is, I think there has been sort of an exodus of people working in healthcare, I think healthcare has become extremely stressful because of all the pressures associated with the COVID pandemic. So having the appropriate staffing for clinical trials has been difficult, but one of the things that I think is coming out of this that I think will be really positive is there are a number of studies that are being looked at now that are actually creating ability to have some of the visits done by a telemedicine. So taking what’s not as critical to be seen in-person, and what labs we don’t need to necessarily get that need to go to a central processing area, but there are actually ways that we are working with home health care companies with different labs to be able to provide some of this ability to do telemedicine, especially on the clinical trials where there’s monthly visits.

I have had patients travel from multiple different areas of the country to be on clinical trials. I’m usually more in the Southwest or at least the West Coast, but I think that with some of these changes, it’s going to be a lot more of a reality for it. So I think some of the pressures of the COVID pandemic will…again, there will be sort of a silver lining of it, and that we may have this ability to do that, because even if I looked at…you look at the pre-COVID clinical trials, if there was a trial that needed monthly visits, which a great number of them do. I would say the majority of my studies that I have for patients with MPNs require monthly visits, at least the first six months. Being able to have that extended out is hugely important and will allow access for it, so if we can have a virtual visit, even every other visit, that can make a big difference in somebody’s ability to access new treatments.

Lisa Hatfield:

All right. Well, thank you again, the push for continued telemedicine benefits would be great. So another question for Dr. Palmer, is technology playing a role in accelerating progress in MPN care, not just the technology of telemedicine, but other technologies? And what role does technology play in symptom management and in clinical trials? You mentioned that you can maybe do telemedicine every other month, but what other roles does technology play?

Dr. Palmer:

So that’s a great question. I actually have been fortunate enough to work with an informaticist who will be joining our faculty this summer, and what we are trying to do is be able to utilize our electronic medical record and some of the forms and texts that you can use within it to be able to capture data and be able to understand it. From the standpoint of even my day-to-day practice, one of the things that’s very important in myeloproliferative diseases is capturing the symptoms score. And this is a way of measuring some of the symptoms that can be very bothersome and troublesome to patients with myeloproliferative diseases and has been validated and utilized throughout multiple studies and multiple settings. So I’m actually in the process of getting that built into our EMR here, so that before patients even come and see me, they can fill out that form of questions. And I think that the sky is the limit. There’s so many patient-reported outcomes and so many things that are going to be important to capture as we move forward. And a lot of times you can ask somebody, “How do you feel?” And they say, “Oh, I feel great.”

Because what else are they supposed to say? Social norm is to say everything’s fine, and then you start to ask them specific things like, “Are you having itching? Are you having fatigue?” And all of a sudden it comes out that they’re really not feeling that well. So this will be really important, and if you can have people do that beforehand, and I think that we can gain a lot of information that can really help utilize the small amount of time we have to focus it on the areas that need to be focused upon.

Lisa Hatfield:

That’s great to hear. Yeah.

Dr. Palmer:

Yeah, the other thing that I didn’t mention is that I think being able to do research. It will be very helpful if we can capture all the data about patients in a way that can be outsourced to a database and then analyzed versus having to hire people to extract information directly from the chart, which is a very laborious process and often not very accurate. So that’s one of the things that we’re working on here is to say,” How do I not only create this template for capturing information from the patient, but how do I make my clinical notes into something that can be harnessed for a database that can then be queried for different questions to try to understand the disease better?”

Lisa Hatfield:

Well, and that is a great segue into what we’re going to talk about with Dr. Sirintrapun. So, Dr. Sirintrapun, as far as informatics goes, can you give us the lay person or a patient-friendly version of what informatics is and what it means for cancer care?

Dr. Sirintrapun:

I really appreciate Dr. Palmer giving the segue for the informatic system. So this is…let me start with maybe when I explain to colleagues and other people about what informatics is. When you think of informatics, you think of three pillars, and we always..I almost have it down like a parrot. So it’s people, processes, and technology. And people always think it’s the technology, but it’s also people and processes, and that’s always been…whenever you see informatics, that’s the three pillars, but I wanted to add one more that Dr. Palmer also mentioned is data and information. You incorporate all those, so imagine all the four pillars coming together to enable the practice of medicine care and at a very high level, what I like to think of informatics is, it’s the science of bridging the gap, decreasing the chasm between the right caregiver to the patient who needs it. Because there are chasms everywhere, in terms of logistics, space, physicality, you have to travel five states to get help with a rare tumor.

Those are chasms there. And I see informatics as bringing all those different pillars together. How do we do it so that the chasm is decreased? Or if it’s not a chasm, decreasing the friction, decreasing the burden between making these things work, making things more efficient. So I think I was hearing a little bit earlier about how can we automate things? As Dr. Palmer mentioned before, data, data abstraction data, being able to pull data from these gigantic enormous resources, it’s tough. And it’s not like we can hire the entire high school student population on their summer internship to go and read through these notes. And there’s not enough money, there’s not enough knowledge. And we need to find different ways that we can use automation, AI, or other things like that to do it.

And this is where informatics kind of delves in. How do we apply all these different things so that people can use it, because you never can forget about people. It works in the processes that take place and it’s the right technology. Because sometimes technology, it’s a great technology, but it’s not ready for certain things. I see a lot of technology kind of ahead of its time. It’s basically a tool in search of a problem and people try to stick it somewhere where it doesn’t fit. So it’s a lot of that. And as you can tell, I’m pretty excited about it because that in a nutshell gives you a feel of what informatics is all about, so.

Lisa Hatfield:

Great. Well, thank you for that. So pre-pandemic…we were talking a bit with Dr. Palmer about telemedicine. Pre-pandemic, you and your colleagues explore the role of telemedicine in cancer care. Can you give a brief overview from your perspective, how telemedicine has evolved and continues to evolve and how you think it might evolve going forward? I guess that’s what evolve means, but. [laughter]

Dr. Sirintrapun:

Yeah, I think I like pulling out these old sayings and I think Winston Churchill was credited with it even though I don’t think he said it, but never let a good crisis go to waste. You probably heard that during COVID, and COVID really blew open the door for telemedicine. I think because we just had to, there was no choice behind that. And thankfully, people…organizations, people recognized it. And I remember in March, March 2020, the public health emergency was declared and a lot of different things that were barriers and a lot of them were regulatory. They were opened up so that it can enable reimbursements, all these different things that factor in. And being able to leverage the technologies, because keep in mind with providers, I knew providers that didn’t know how to use Zoom and other technologies. And because of COVID, they were forced and they found out, “Hey, it’s not that bad.” But if I were to do that before the pandemic, they’d be like, “Well, why should I? We’ll just show up in this conference room. We’ll just be there at six o’clock in the morning.”

So it opens people’s minds. And I think that really helped. I don’t think that Genie’s going back into the bottle, not at least completely. I think we’re going to figure different ways to leverage those technologies moving forward. So in terms of telemedicine moving forward, some of the things I’d like to see and hence I think this is maybe one of the reasons why I’m here, is like how do we enable clinical trials to embrace the telemedicine model? Because clinical trials till now historically has been kind of a physical model. You have to go to some ivory tower, some centralized place and that really limits down, the patients can do it. There’s access problems. Even if you had the richest study in the world, you had to fly people from all over the world. You can imagine that just drains the budget. There are just all these different things there. And when you think of the way clinical trials are conducted, it didn’t really take into account telemedicine visits.

At my institution Memorial Sloan Kettering, we developed an entire ecosystem of telemedicine tools to actually try to encompass the patient experience as close as we could. Because the experience, it can never be completely duplicated, but you can do certain things definitely through telemedicine. We tried to do our best to do it so it’s easier for patients, the nurse coordinators as well as the providers to use that. And clinical trials, they’re moving towards it. They’re acknowledging the issue and they’re rethinking the ways to do it. How can we enable it so that we can decrease the chasm between the patient and being able to enroll in a clinical trial? So in a nutshell, that’s the way things are going. We’re not there yet, but we’re definitely thinking about it. It’s definitely a discussion. I think the future will see a much more clinically- and a telemedicine-enabled clinical trial framework.

Lisa Hatfield:

That’s great to hear. For patients, I think that’s really, really encouraging to hear that we’re utilizing that technology. So in addition to the telemedicine technology, there are other types of technology that are influencing cancer care. Can you speak to some of those technologies? I know I’ve always been really interested in the CRISPR technology, which I don’t hear about as much anymore. Artificial intelligence, my oldest daughter is graduating from college this year. That’s what she’s studying. So can you touch on some of those technologies and how those are continuing to evolve also?

Dr. Sirintrapun:

Oh yeah, there’s a lot. So maybe as a disclaimer also, in addition to being an informaticist, I’m a pathologist. So it’s a great honor to speak in front of patients, because many patients may not necessarily know whenever you get a diagnosis, there’s a pathologist who made the diagnosis on a glass slide through a lab test. So that’s my path as a pathologist. So a lot of my technology mindset is in terms of diagnostic. So how do you make the diagnosis better? And you mentioned about…well, I mean, we’ll start with CRISPR. CRISPR is not necessarily in the diagnostic front, but it’s a very exciting thing, especially for those tumors that have genetics. One of the simple genetics. You misplace one gene here, and all of a sudden it just alters the way one protein goes, and it leads to a disease, a cancer. And if you’re able to surgically or genetically microsurgery, you can imagine the implications and the transformation for that.

We’re already looking at it with hereditary diseases like Huntington’s and some of the different blood disorders out there, which have like single genes or maybe a couple that you can just sort of pick out there. It’s still early. And that’s maybe the reason why you haven’t heard the technologies there that can do it. But how to deliver it, how to do the microsurgery. You can have the scalpel, but somebody has to hold the scalpel and how to do that in terms of what type of nanotechnology is out there, all these different things. But CRISPR is very exciting. I do expect over the next, definitely in the next couple of decades, you’ll see something, some brilliant application coming out of that.

Now you mentioned AI, that’s definitely down my wheelhouse because I implement a lot of…I see a lot of AI, and I try to figure out different ways to implement the AI into healthcare. Because there’s tons of AI out there, but the idea is to basically use the right AI at the right time with the right person using it and for the right problem. And there’s a lot of rights in there, and it sounds simple. But you have to keep in mind that in the AI world, we sort of separate AI into like general AI and narrow AI. General AI is kind of the, is what some people term the singularity. Like it knows everything. It can read your mind. You can switch the setting of whatever it is. It can write poetry in one setting, play the piano in another. There really is no such thing.

So if you hear ChatGPT, if you ask it to play the piano, it’s not quite applied for that. It’s really for language. And I try to illustrate that point because that…all these AI currently that’s out there is still in a narrow AI. It doesn’t do what a person does. As people, we can switch. We can task switch. We may not beat the robot, but we can certainly task, if the setting changes, we can adjust. And that’s the power with our intelligence. We’re generalized. While most AI is narrow, but very good. They can be…obviously, when IBM Watson beat everybody at Jeopardy, and now you hear ChatGPT beat people in passing the boards. So a lot of med students are going, oh my gosh. Keep in mind that it’s narrow. I mean, this is what the robot is really good at. They’re very good at facts. They’re good at other things. And you can use that. You can, but they’re not going to be able to task switch.

And they’re not going to be able to know when they need to deploy the right situation. Remember, they’re narrow. So they’re not going to know when you change a situation. It’s not going to know when to switch. That’s the job of a physician, maybe the patient. And it’s my job as kind of the engineer or an informaticist to figure out when those come in. When should it trigger at the right time? When to make sure that people don’t misuse it at the wrong time and deploy the right problem to the right AI. And so, for instance, as a pathologist, one of the big hottest things that we have right now is prostate biopsy. I deal with male cancer. So I deal a lot with prostate. But the AI is pretty good at actually even, I would argue, probably getting better at catching cancer in a small prostate biopsy than humans are. There are small things that maybe, for whatever reason, human factors being tired, the AI can actually catch it quicker.

It might overflag. It might catch things that are not necessarily cancer. But it will catch it. It will catch it. And it can be very helpful. Because you can imagine as humans tire, they can use that to screen. It may not be perfect at diagnosing, but it can screen. And at least it won’t miss anything. And then the human, the pathologist who comes in, can go and say, I can confirm that that’s cancer or not. So you save a lot of mental power, mental energy in terms of things. And this is an application of AI helping providers, and I can see in the future even patients sort of answer questions that would have been very laborious, tedious. This goes back to the automation theme that we had earlier. How do we make things easier? How do we decrease the friction? I sort of illustrated a case where they had friction points and tiredness and things like that. And so these are things that are on the horizon.

And I think we’ll learn a lot in the next decade or so. You’ll see a lot pop up. You’ll probably see some mistakes too, people overusing it or being in the wrong situation. But that’s the way medicine works. Medicine works through some trial and error. You make your best guess. You have experts. But in the end, there’s a lot of unforeseen things. But you learn a lot along the way. And you learn when to use it. And eventually, you reach this equally important point where everything works very well. It’s part of the workflow. It’s just part of…you just expect it. It’s just when you go to care, you just expect that there is a human overseeing some AI that’s making sure that you’ve got the right diagnosis that nothing’s left out, nothing’s omitted, and you can trust it. That’s kind of the place you eventually end up being.

Lisa Hatfield:

Well, and you hit right on something that I think a lot of people worry about is how can we trust AI and all of the ethics surrounding that? Can we really trust AI? As a patient, I’m fascinated by that. And I know that the Cancer Moonshot Program has directed some funds to AI and cancer research. I look forward to the day when there’s a bridging of that gap between research and then clinical practice with humans involved in a lot of the decision-making along the way also. I’m not sure that we can ever move away from that. But that was a great overview of technology. I hope it continues to evolve. I hope what I’ve seen, what you talked about, you work more in solid tumors. I have a hematologic cancer myself. But I do see that there is some AI being used in earlier screening and also in the identifying of different genetic mutations within those cancers. So I look forward to that continuing to evolve.

Dr. Sirintrapun:

That reminds me, too, and I left that part out. Some of these technologies…I’m sorry I left that out, but genomics has become a big thing over the last decade because of the Cancer Genome Atlas and other things that actually allowed us to map the genome. But along that front, we have technologies that can monitor progression. So we can at the cellular level. If you’re actually circulating cell-free DNA as a technology that’s out there. Where if you can implement it correctly, you can actually follow the patients just through blood without anything invasive. And it’s much better than any imaging study out there. So there are technologies that are evolving on this. And because of all the progress we’ve made over the last 10 years, you can see that being incorporated in a clinical trial where you can monitor patients much better. You can intervene faster and more effectively and all those other things like that. And thanks for reminding me about that. I forgot to mention cell-free DNA is another one that I’m very excited about, still early.

Lisa Hatfield:

Yeah. Well, thanks for that information. Dr. Palmer, do you have anything to add to this informatics description or discussion?

Dr. Palmer:

Well, I think there’s a couple of things about the technology component of it. I know it was several years back, CRISPR, when it first came about. It’s a brilliant technology. Everyone got very excited. Okay, if you look at a lot of the myeloproliferative neoplasms, there are three driver mutations that are really felt to contribute strongly to the development and the ongoing nature of the disease. Everyone said, “Oh, I can go in and if you take out that gene and replace it with the new one, I can fix it.” I think that where the role of CRISPR right now is, is it’s doing amazing things to help us understand the biology of the disease.

I think in terms of treating a lot of the malignancies, they’re so genetically complex that even though we say, okay, well, you have, for example, a JAK2-positive essential thrombocythemia, which is JAK2 is one of the driver mutations and essential thrombocythemia is too many platelets. Unfortunately, I probably can’t go in there and get all the JAK2 mutations in the blood system to replace them. Now, where it is making huge strides is in things like sickle cell disease and thalassemia, where there is one gene that is the problem. And even if you only replace it in 50 percent of the cells, you can really drastically change somebody’s life. So I think that it is used in certain situations and is absolutely astounding and amazing. I think its utility and completely eradicating cancer is going to be something that is going to take a long time to come about. But I do acknowledge that it’s making enormous strides in understanding how everything can work, because you can quickly remove something, replace it with something else, and really understand what the function of that mutation or that gene happens to be. In terms of the artificial intelligence, I’m looking forward to seeing how it can be used.

I think it’s right. You try to find, how can I come up with the right answer? And once you think, “Oh, this should be easy, I should be able to look at somebody’s blood counts over the course of a year and be able to predict something.” But to actually be able to do that, I think, is going to take a lot more thought. So it is something that I’m hopeful that we can all start to utilize more. I think the last thing is, is some of these really fancy ways of detecting minute amounts of diseases. I think circulating DNA, which I frankly don’t know a lot about, because I don’t treat a lot of solid tumors. But also, when I look at just bone marrow disorders, like acute leukemias, we often look for something called minimal residual disease, which is this below the microscopic level. You’re looking at like one cell out of 0.001 percent of the cells.

And honestly, we don’t really know how to deal with that. And I think sometimes it ends up providing more anxiety, because you have otherwise a disease that you would say, under all historical purposes, you’re in remission, this is great. And then you have this little amount of disease. And sometimes it’s good, because it can help us determine the next steps of therapy in a more effective way. But sometimes it just creates stress, and we don’t truly know the actual meaning of it.

Lisa Hatfield:

That’s a really great point, the minimal residual disease, is we’re testing such a deep level of sensitivity. Do I want to know that much, because would it be treated anyway? Will it make a difference? Or will I be overtreating a cancer with the chemotherapy agents or agents that are more toxic? That’s a great point you bring up.

Dr. Palmer:

Yeah.

Lisa Hatfield:

So, yeah.

Dr. Palmer:

It’s a very difficult one. As we get more and more of these tests, we’re finding more stuff that we don’t really know what to do with.

Lisa Hatfield:

Yeah. So and I just want to take a step back really quick. So we were talking about the CRISPR technology. And, Dr. Sirintrapun, if you can just clarify for me, for any patients watching this, so CRISPR is the technology that is used, or the methods used to edit genes. Is that correct? It’s not an actual therapy a person can receive. But it’s the technology that’s used to edit genes.

Dr. Sirintrapun:

Yeah, it’s just the technique.

Lisa Hatfield:

Okay.

Dr. Sirintrapun:

But it’s not…but yeah, therapy is a bigger…you can imagine therapy being a big umbrella. And then the technique would be there. So it’s more…

Lisa Hatfield:

Okay. Just wanted to clarify that for people watching this, since we’re talking about that CRISPR. So and Dr. Palmer had touched a little bit on the personalized medicine for MPNs, looking at specific mutations like the JAK2 mutation, MPL mutation. Dr. Palmer, can you share some examples of how telemedicine is influencing personalized medicine in MPN care?

Dr. Palmer:

So I think one of the key…so when we look at treating different myeloproliferative neoplasms, you have to take what’s your goal of therapy. So for the ones like essential thrombocythemia, where you have too many platelets, or polycythemia vera, where there’s too many red cells. A lot of times what you’re doing there is you’re just saying, well, how can I predict whether you’re going to have a blood clot or something? Because people can live, these can be fairly chronic diseases that with appropriate therapy, people can live a long time.

So a lot of that’s risk mitigation. Where I think a lot of the personalized aspect of it is coming in is probably in myelofibrosis, which is a disease where I view it as too much inflammation, scar tissue develops in the bone marrow, people could get a large spleen, high white blood cell count. A number of different manifestations. And in that, we’re learning more and more that in addition to the three driver mutations, the JAK2, the MPL, and the calreticulin, there’s probably a whole other group of mutations that can really be used to help us predict and try to take a look into the future to help guide them. And what is the timing for transplant? Should we be more aggressive as we’re getting more and more agents being evaluated and hopefully approved in the treatment of myeloproliferative diseases? Who are the people who should utilize these agents?

Because again, you don’t want to overtreat. And so I think that being able to hone in on these different mutations to be able to help us predict what we think will happen and maybe different treatment options that we would have, that’s going to be important. Now, one of the things that’s really exciting is that some of these companies that actually do this deep sequence, like looking at multiple, multiple genes, actually have mechanisms by which they will send somebody to a person’s house and then draw the blood and take it over and run it. And so I’ve actually had that done before, where somebody I saw via telemedicine, and we really wanted to get that information so I could appropriately advise on what I anticipated was going to happen in the course of the disease.

And we were able to actually get that information through using home care, saying, I want this order to be done. The home care people went out, drew the blood, sent it to where it needed to go in the right format, and I was able to get that information. So I think that telemedicine allows them access to people who understand how to interpret that information. But I think we have to give a lot of props to a lot of these companies that are really getting innovative in how they’re capturing the data, saying, “No, you know what? You don’t need to have this done in Scottsdale, Arizona or Phoenix, Arizona. You can have this done in your own home and wherever your home happens to be.”

So I think that that type of thing is really changing some of how we can utilize that data that’s very personalized, but be able to use it in a telemedicine format where we don’t need people to physically come here to get their blood taken. Now, I do want to add the caveat. There are a number of different institutions that have enormous amounts of lab work that’s looking at things above and beyond the approved tests that have been validated and everything. And that would be a lot harder to get. There still are ways of doing that, but I think that we have to acknowledge that there is something that we do lose by doing that. Although I can get a lot of information, be able to provide a lot of input to a patient. It still doesn’t address the fact that by physically being there, sometimes you can get samples that you can biobank, and you can send to somebody’s lab. And then these are the people who are discovering the new things that really that’s how we learned what we know so far. Is because somebody went and looked at these genes and more and more and more of this is going on. So I want to temper this with saying not everything can be done by a telemedicine.

That we have to be thoughtful about our approaches and really utilize combining in-person visits along with telemedicine to really do care. And to give an example, what I do for patients is if I follow them by a telemedicine only, I won’t actually be a prescribing doctor. I won’t be a primary provider. I have to at least see them once a year if I’m going to give medicines or do things like that. So I think that there’s a hybrid model that’s going to be really important to do as well for patients who are able to do that.

Lisa Hatfield:

Thanks for that.

Dr. Palmer:

If that makes…yeah.

Lisa Hatfield:

It does make sense. And I just had a quick question too. So if I’m coming in or I’m going to see my…I’m a newly diagnosed MPN patient going into my local oncologist. I’m watching this webinar and I hear, “Oh, if somebody came to my home. I could maybe do telemedicine, or I can have somebody come to my home and take my blood and look at these genetic mutations. My local oncologist doesn’t know exactly how to go about doing that.” Would that be the point where they might try to contact a specialist or go through the consult center through Mayo Clinic or somewhere to say, “Oh, I need a specialist to help me access this type of testing?”

Dr. Palmer:

So I have to be very honest. I just learned about this type of testing in the last year or so. And so it’s something that I’ve started to be able to utilize. With myeloproliferative diseases, I think, and very honestly, and there’s a number of us specialists around the country, I think everyone seeing one at least once in terms of just saying, “Hey, what’s our plan of care going to be?” Are we looking at all the angles of it is a really important thing to do. And I think there’s a number of excellent physicians out there in different parts of the country that some of whom are using telemedicine, some I’m not sure that they are. But I think that getting that specialized opinion is extremely important. I think then in terms of managing care, there’s multiple… Give me a second, I’m sorry. There’s multiple ways that can be configured that will help take care of the patient depending on their individual needs and their ability to travel and everything.

Lisa Hatfield:

Okay. That’s really helpful. Just as someone who has an excellent local oncologist but we don’t do some of the tests here. So that’s why I see a specialist. And they send me actually a kit, a lab kit to have something sent back to Mayo Clinic. And I love that. It makes it so nice to know where I’m at with my disease. 

Okay. So, Dr. Sirintrapun, the importance of connecting to specialized care when living with a rare cancer is so paramount. But with anything comes risk and rewards. What are the risks and rewards of telemedicine and maybe even some of the limitations? You both touched on that a little bit. But if you can talk about that a little bit, that would be great.

Dr. Sirintrapun:

Yeah, I’m so glad that Dr. Palmer actually illustrated to everybody, including myself, kind of how the processes work and if you had a trial, particularly with monitoring, and getting the right tests. So being a pathologist, that’s the other hat, I look at glass slides, but I also handle a lot of tests in particular, is looking at them. And in Memorial we do those complex humongous genome panels, it’s actually become much more commonplace to have 500 genes. And as Dr. Palmer had alluded to, sometimes you don’t know out of the 500, which are really meaningful, which are not. But out of that, you do know with some of them. I see it like the initial diagnosis, at least with technology, like the complex testing being done, still centered. It’s hard to outsource that to locally.

But in terms of convenience, I can see a future where a lot of these tests can be done more closer to the patient, where they’re simpler, there’s more automation. Somebody who might be a lab tech or nurse practitioner might, the instrument might be simple enough to press a button, and you’ll get your results. And that’ll be just the right amount of genomes to monitor. Now going back to rare diseases and such, it depends on the rare disease. Because rare diseases have been kind of the classic paradigm for a clinical trial where you have to go to a centralized center because a lot of times the way rare diseases work is that they’re, at least in pathology, there centrally to an expert. Because there’s only one person that’s ever looked at it in the entire world and nobody else really knows. And you end up sending it to that guru.

And so the problem with that is that somebody has to know from the outside, “Hey, I think it’s this, I should send it to that person.” So you have, you already have friction and a gap right there. And you have the logistics of it just, okay, once it’s there and you get the diagnosis, what happens next? Can the patient who might be living from wherever be able to go and get enrolled in that trial? So you have all these different barriers that I alluded to before. So the advantage of the telemedicine is that you basically might have diminished the gap. You can bring that expert in terms of consultation to the patient who lives very far away. Now, going back to all the logistics about monitoring, if you had the right lab tests, and this is where the FDA comes in, and we don’t have time to go into the way lab tests are developed, but if the lab test is simple enough, you can do the monitoring more closer to the patient.

And in that way the clinical trial is much more enabling. They don’t have to fly somewhere, you have to go some…it all depends on how they can actually get the test to the right quality level and closer to the patient so that you can have the monitoring as more frequently, and you don’t have the cost of actually having to ship either the patient or the sample elsewhere. So things that are changing, I’m hoping, because the technology’s there, and it takes architects of clinical trials to rethink that. What’s the right technology now that we can apply it locally, so that we don’t have to do all this back and forth. And so that’s the type of thing. So going with the record, there’s lots of opportunity. I think the cautionary part would be is that tech, if you’re going to deploy something, let’s say near the patient, we call it point of care in lab testing, point of care, right?

Right, right near the patient. You have to make sure that lab test is quality, it’s actually good enough, like it met all the standards, and then you can trust the results. That’s the trick. And that’s where the cautionary part comes in. Are these things really good enough that anybody with a little experience can use it and that people can interpret the result and you can trust the result. That all these things are in place. I’m giving you the ins and outs with the way, when you want to deploy something, these are the different things you have to consider. But there’s a lot of potential as I mentioned.

Lisa Hatfield:

Sure. Great. Dr. Palmer, do you have anything that you want to share or add to that? Risks, rewards, limitations for MPN patients about telemedicine?

Dr. Palmer:

So, I think that brought up a really good point. So when we look at these tests that you can order, I think there’s a lot of companies that do very reputable tests that are even sometimes utilized by some centers. And so at the first diagnosis, I think there’s the piece that what is going to help clinically based on the knowledge that we know, and that is some of these tests that actually can, are very good quality have somebody to be deployed, draw the blood, send it to wherever and do the test. Sometimes it’s good to be at the center itself where there are actually labs and that increases the learning. I think that the architecture of the clinical trial which was a great way to put it, is going to be really important, because if I take a complete blood count, honestly, I mean, anyone can do a complete blood count and I can get the information that I really need to get out of it.

If we look at drug levels, that’s a far different animal is to make sure that these drug levels get drawn in the right way at the right time, sent to the right place. That can be a real challenge. So there are going to be different aspects of the clinical trial that can and cannot be done virtually and through outside resources. So I think that, that it’s certainly not all created equal. So there’s no way I can do the entirety of a clinical trial without physically having a patient at the center. However, on the other side of that coin, I think there’s probably a number of things, especially with like really routine visits where we’re not getting drug levels, we’re just checking a CBC, or a complete blood count or chemistries or something in the blood, that that can probably be done almost anywhere.

So it’s just going to take an extra layer of thought. I think that a lot of times you use what you know, so you say, “Well, this is how this clinical trial was run, and they have to come in, and they have to get an exam, and they have to get a CBC and they have to get everything else.” I think that there are going to be ways that we can alter that to really think what are the meaningful things we need? Like we don’t use every single solitary time point, “What are the safety measures we need to make sure we capture?” So it is going to require sort of a lot of thoughtful processing to figure out how to do that. The other thing to be cautious about is if you have the interpretation of the test.

So let’s say I send out a lab to one of the companies that does really extensive panels of genes, and then it goes back to their primary provider. They might look at that and go, “Well, geez, I don’t know what any of this actually means.” I mean, frankly, out of those 400 genes, there’s a number of them that I don’t even know how to interpret. I say, “Well, this is interesting, but these are the ones that I know are really critically important and can impact your, what I anticipate is going to happen to you. But some of these we don’t know yet.” I mean, I think that’s what we’re learning about. So doing these tests, sometimes getting these big panels can be confusing and frankly scary if you don’t have somebody there who is able to say, “Yes, these are the important ones. These are probably not that important. So it’s interesting that you have them, but we don’t need to worry about them right now.”

And so that’s really key ’cause otherwise you start to go to Dr. Google and, which is not anybody’s friend, and get yourself really terrified. So I think that that ability to put things into perspective is also, and have the ability to incorporate it into the education given and the treatment plan is really critical. So again, a hybrid model is really necessary for a lot of these to work well. And how that hybrid model works is going to be dependent on the disease type, the clinical trial in that situation. But I think that there are ways to do it, and I personally in my own practice have created a set of rules that I’m like, “Okay, well, for this and this and this and for this you have to do that and I need to do this.” So I have certain things set up to make sure that I feel like I am providing safe-care, but also being able to provide it virtually.

Lisa Hatfield:

Great. That’s great information too. And I am guilty of using Dr. Google probably more often than talking to my doctor. So most of your patients probably are, and they just won’t admit it. So I’ll admit it for all of us. [chuckle] Yes, thanks for explaining that. So I think we’re going to talk just a little bit, we’re going to move on to talking about best practices for MPN patients and families using telemedicine. Dr. Palmer, we’ll just start with you and then talk to Dr. Sirintrapun about that. But what are the best practices for MPN patients utilizing telemedicine? And what are some of the newer technologies that we’ve even talked about today that are being explored that you’re most excited about?

Dr. Palmer:

Well, again, I think it’s hard to say the right way to use telemedicine. I think that, as much as automation and trying to come up with processes that are very standard is important, I think it is still a learning process. How long is it safe to do telemedicine? How many, if I’m the only provider seeing this person and there’s not somebody physically looking at them, am I doing a disadvantage? So like, what’s the safety realm in that? I mean, that is something that I know comes up, and it comes up with a lot of physicians, like, “Well, I have to examine the patient, I have to eyeball the patient.” So trying to figure out that balance of making sure you’re providing good quality and safe care, but that you’re also allowing for people to have access to things they otherwise wouldn’t have access to.

And some of that is a matter of having good collaborations with providers in different places and the willingness of the local providers to work with one of us. And some of that’s just kind of saying, “Well, I’m going to try this.” And then after a while if you say, “Hey, this isn’t working well,” then you switch it. But I think a lot of this is something that you can’t prescribe. It is something that needs to be the level of comfort for the provider, the level of comfort for the local provider and the patient. And it’s not going to be the same for any two patients. There certainly is going to be some variability. I’m very excited about the ongoing telemedicine and our ability to utilize it. I’m really hoping that even after the public health emergency, some of the barriers to being able to provide telemedicine outside of your own state will not be a problem. And I think each institution’s handling it a little bit differently.

So that’s something I’m excited for, and there’s probably going to be a lot more that I can’t even begin to think about that’s going to come up in terms of ways that people can, like there’s handheld imaging machines and stuff like that. Is there going to be a way that we can actually have patients apply it? So, for example, I like to feel spleens in patients who have myeloproliferative diseases, because they’re often enlarged. Is there going to be a way that there’s some type of equipment or some type of material that can do a spleen exam without me actually having to physically see the patient and lay hands on them? This is something that I probably, people are thinking about who are a lot smarter than me. And I’m looking forward to something like that being developed. But that’s what I’m hopeful is that we get to the point where I can feel like I’m providing really top quality care to people who could be anywhere in the United States or even honestly the world.

Lisa Hatfield:

Yeah. That’s fascinating. And from the patient perspective, again, it gives me a lot of hope to think that there might be a way to complement the care that we’re receiving locally through telemedicine. So, Dr. Sirintrapun, we’re always looking for hope, we cancer patients. So what are some of the novel technologies and therapies that you’re most excited about?

Dr. Sirintrapun:

Oh, my gosh. Let me just say that it’s great to be excited and I spend a lot of…what keeps me going is just being excited about things. But it’s also important not to be reckless. And I think for a lot of people that are in this technology thing, you see the balance between, well, you don’t even necessarily see the balance. They’re more excited, and then you overstep. And so that’s really the guiding principle, excited but not too reckless to take things with caution to study, learn from things. And I really appreciate Dr. Palmer sharing that, because she brought up a lot of different points. Like as you move forward, you have to consider X, Y, Z, I think a lot of the audiences heard that. That said, I’m excited about a lot and getting a little wonky with the technical things.

I’m excited about the mobile technologies, I don’t exactly know this is going to be somebody else more creative than myself about how do we incorporate that? These different biosensors, if heart rate’s important and that’s a side effect of a drug, how do you incorporate that into the healthcare information system? I’m going to put a little knock on the healthcare information systems or a little less technologically advanced is then what you see with the iWatch. I would argue that the stuff with iPhones is much more advanced to the dismay of many patients…maybe surprise of many patients. [laughter] We deal with some old technologies in healthcare. And so how do we incorporate these new technologies into this old ecosystem? But that said, there’s a lot of potential wearables, biosensors testing that could be close to point of care on the connectivity aspect with the 5G and stuff.

I don’t fully know all the 5G aspects, but think of the prior Gs that were there that allowed for GPS and all these different things that were not possible when you had 1G. Now we have 5G. Who knows what you could do. You can actually apply AI in real time before you would take 10 minutes to process it. Now it’s just happening somewhere at a cloud close by, and it’s happening very quickly. You can imagine all that. So things like robotic surgeries can happen. Processing of immense data can happen very quickly. You can get your information without waiting a day or two weeks. So those things are very disruptive, and I’m excited about that. I’m hoping that the players that are out there also keep the cautionary aspect that as you move forward, don’t jump too soon.

Try to learn things. Do not overpromise. Because it’s a thing for patients as well. I mean, many physicians don’t necessarily know they’re not, when you see something, they’re enamored by it. But the questions you should ask, “Is it ready? Has it been through the paces yet? Can I trust it enough?” And that’s the part that…and I try to maintain it, and I hope as people go and innovate that they don’t overpromise on things. Think the Theranos aspect, we could do all this X, Y, Z. That’s one lesson and there’s going to be more. Trust me, that’s not the end of it. Because as I mentioned, people tend to get excited, but it’s also very important to be cautious and not reckless. And I think that’s the lesson I would convey to anybody excited about this.

But there is a lot excitement, there’s a lot of potential people who think very smartly about it can think of all the different cautionaries of how to implement it because it’s all about the implementation. How do you make sure it’s ready, and you can implement it correctly so that the people that are using it and people that have to interpret it and the people that it’s going to impact it all matches? It actually really is appropriate for that time that, that’s beyond just the technical. That’s why I said I…hen I said informatics, it’s people processes. It’s not just the technology I wanted to focus on it, it’s the entire picture of things. And so that’s it. That’s kind of the way I sort of see us moving forward. 

Lisa Hatfield:

We’re moving forward. We are progressing, but we have to take caution in how we implement. So yeah, that makes a lot of sense. Thank you for that. So I have a lot more questions, but it’s time for us to wrap up and you spend a lot of time with me as a patient helping me and hopefully with other patients watching this. It’s really refreshing to hear about advances in technology that can potentially extend my life and the lives of other patients living with life-threatening conditions. We appreciate all the new tools, we appreciate all the information being put together, and utilized to help cancer patients everywhere. And thank you so much. I don’t have an MPN like I mentioned before. I have multiple myeloma, and I have been dealing with that for four years.

I’m looking forward to a technology someday where I don’t have to have bone marrow biopsies to determine how much cancer I have in my bone marrow. But that might be a pipe dream. I don’t know. [laughter] So anyway, thank you so much for spending time with us, Dr. Palmer and Dr. Sirintrapun. We really appreciate the time and as a patient myself, I’m always grateful when you come on these programs. I watch webinars all the time to get more information, so I can better advocate for myself or for my friends who have cancer. So thank you so much for your time and for your expertise. Really appreciate it.

And just a reminder to anyone watching this program to always consult with your own medical team about what is right for you and about your own healthcare. Thank you again, Dr. Palmer and Dr. Sirintrapun. Hopefully, we’ll see you again on a future webinar. Thank you.