Tag Archive for: MyChart

Key Advice for Myeloma Patients | Questions to Ask About a Care Plan

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Key Advice for Myeloma Patients | Questions to Ask About a Care Plan from Patient Empowerment Network on Vimeo.

How can newly diagnosed myeloma patients be proactive in their care? Dr. Krina Patel shares key advice for patients, including the importance of making notes before office visits and the role that a care partner can play in overall support. 

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Krina Patel.

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Transcript:

Katherine:

For newly diagnosed patients, what key advice would you share with them? And are there specific questions they should be asking their doctor about their care plan? 

Dr. Krina Patel:

Yeah. So, I know it’s hardest for newly diagnosed patients. Most people have not even heard what multiple myeloma is. They’re learning how to spell it correctly and making sure it’s not melanoma. And this is a conversation I have with so many of my new patients that I think it’s really hard your visit, and maybe even your second visit, to ask all the right questions. So, really, coming home and every time you’re on a treatment or you’re talking about a treatment and you have a question, write it down because I know it’s really hard when we’re only there for 15, 30 minutes to talk to you.  

For us, we have MyChart, so my patients will send questions as they think of them through that. And I think that’s really important. Sometimes it’s hard to know what questions to ask when you have no idea what’s about to happen, and that’s okay. But I think as you’re going through therapy, really making sure that you ask about alternative therapies that might be available and why someone is picking one versus the other, making sure you know what supportive medications you really need.

And I will say that, with myeloma, a lot of our treatments are patient-friendly but they do cause side effects and infections, so, we have a lot of supportive medications we use; so, again, anti-shingles, potentially if you could get a blood clot, we have you on some type of blood thinner.  

We have people on against steroids because of all of our initial therapies have steroids. We wanna make sure you don’t get ulcers in your stomach, so we have patients on proton pump inhibitors. There’s a lot of things we do to again decrease that toxicity. So, that’s important.  

And then, I think the next part is when you’re on treatment, whatever symptoms you’re having keep a log of that. Some things are, okay, maybe it’s just a little bit here and there, that you’re feeling fatigued but then you’re better. But there are certain things that cause a lot of side effects that my patients sometimes don’t tell me about. So, the steroids can cause major insomnia for some of my patients where they don’t sleep for three days, and that’s not okay. We can decrease those.

So, there are ways to manipulate the treatments as we’re going through to make sure that not only are you having a great response but that you’re not having major side effects that are actually gonna hurt your health down the road. So, really important to discuss those things that you’re having as you’re going through.  

Katherine:

There’s also the importance of a care partner in your life –  

Dr. Krina Patel:

Yes. 

Katherine:

– right?  

Dr. Krina Patel:

I agree. So, I joke with my patients but it’s real; there’s actually a study that shows that men with three and a half women in their lives do much better in healthcare in general than those who don’t. So, I’m like “Go get more women in your life” – 

Katherine:

I love that.  

Dr. Krina Patel:

– or just caregivers in general.  

Men are great caregivers too, but really having someone there that can listen for you and write down those things because it is overwhelming. And when you’re on treatment there are a lot of times when you just can’t pay attention. You can’t focus. You can’t listen to everything. And so, the more people that are there, they’ll pick up other things.

So, a lot my patients will even have their loved ones on their phone with them, even if they can’t be there in person so that they can record. And a lot of my patients will record things and they’ll ask me; so, definitely as whoever you’re talking to if it’s okay to record. But most of us will say “Yes, it’s completely fine” so that you can listen to it again when you go home.   

Will Advancing Technologies Allow MPN Clinical Trials in Patient Homes?

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Will Advancing Technologies Allow MPN Clinical Trials in Patient Homes? from Patient Empowerment Network on Vimeo.

Will myeloproliferative neoplasm (MPN) clinical trials at patient homes be enabled by advancing technologies? Experts Dr. Krisstina Gowin from University of Arizona Cancer Center and Dr. Ana Maria Lopez from Sidney Kimmel Cancer Center share their perspectives on clinical trials models that work well with remote models and an update about the hospital at home concept.

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Transcript:

Lisa Hatfield: 

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 their 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. Ana Maria Lopez: 

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

Lisa Hatfield: 

Oh, Yes.

Dr. Ana Maria 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 televisit 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 want to 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.

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. 

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