Tag Archive for: telemedicine advice

MPN Patient Shares Advice for Making the Most of Telemedicine Visit

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MPN Patient Shares Advice for Making the Most of Telemedicine Visit from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Debbie has had the opportunity to utilize telemedicine in her care. Watch as she shares the pros and cons of telehealth methods in her blood cancer monitoring and her advice to other patients for optimizing virtual visits.

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Transcript:

Debbie:

I think there is definitely a place for telemedicine in our care. It has enabled us to, or enable me to keep in touch with my hematologist and to understand where my blood counts currently are. What I would also say is, it’s…that there are positives and negatives. I think that the positive of it is the fact that I’ve got a regular update on what my blood counts actually are. I think the negatives of it can be, is that it is quite easy just to move the conversation quite quickly forward. It’s easier for me to just say, everything’s all okay. Thank you for updating me over the telephone, then it is perhaps if I was actually sat in front of somebody.

I think that the challenges it presents is that personal touch, is that feeling of being able to have a one-to-one relationship with your consultant. I don’t think you have that over the telephone.

So, some of the tips that I would share are that you keep in regular contact with your hematologist, you keep regular information on your blood counts, but you keep in a very, very safe environment. You do keep in a safe environment, and that I think is something that’s enormously important. A tip that I would probably give is that make sure that in between your appointments, you do what you would do regularly on a face-to-face and make notes of the things that you want to talk about…because I quite often put the phone down and think, I wish I had said that when I go to the hospital, I will have my notes in front of me and I put them on the table, and I’ll cross-check them with the hematologist at the time, I tend not to do that on the telephone, and perhaps I should, so I would definitely recommend that you treat the tele appointment exactly the same as you would the hospital appointment.

MPN Patient and Care Partner Tips for Utilizing Telemedicine

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MPN Patient and Care Partner Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Summer Golden and care partner Jeff Bushnell have learned the ins and outs of telemedicine. Watch as they share some advantages of virtual visits, instances when in-person visits are used for MPN monitoring, and their tips for optimizing telemedicine visits.

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Transcript:

Jeff Bushnell:

We are very fortunate to live in San Diego here where there are major medical centers and research universities and so on, but a lot of people aren’t… and these MPNs are very, very rare diseases. And there are not a lot of doctors that specialize in them, so telemedicine will allow you to contact a specialist.

I know when we see the Summer’s doctor in-person, she does a physical exam specifically to check her spleen size, which is an important aspect of almost all of these MPNs and without the ability to do that the doctor is working all solely from blood counts.

Summer Golden:

It’s just like Zoom, it’ll never go away, and I do believe telemedicine will be here forever, another technical advantage.

Jeff Bushnell:

I think, especially after COVID, people are more used to telemedicine, and in the MPN community anyway, because of the lack of large numbers of doctors that know much about it, like telemedicine will open up sort of a new, a new type of being able to treat MPNs, just because more people will be able to contact specialists.

Summer Golden:

A top tip I think, it’s sort of logical, but is to have the questions and issues written out because it’s a limited matter of time and to specifically jot down the answers.

Jeff Bushnell:

Another tip would be to ensure that you have the appropriate stuff on whatever device you’re using to talk to the doctor on. We’ve used about three or four different apps as it were on our phone to communicate with different doctors, and you need to make sure that that works ahead of time. Usually, the way they do it is they set up the appointment, they contact you ahead of time, and make sure that it’s going to work before they put the doctor online. But that’s very important that you have the technical ability to ensure that your equipment can support telemedicine. They’re making it pretty easy, but you still have to do it.

An MPN Expert’s Top Three Tips for a Telemedicine Visit

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An MPN Expert’s Top Three Tips for a Telemedicine Visit from Patient Empowerment Network on Vimeo.

As a myeloproliferative neoplasm (MPN) patient, what steps can be taken to prepare for telemedicine visits? Expert Dr. Jamile Shammo from Rush University Medical Center provides her key tips to help ensure an optimal telehealth visit. 

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Transcript:

Dr. Jamile Shammo: 

When preparing for a televisit, I think it’s so important to know whether or not you would have a connectivity issue. A lot of times I’m trying to connect with the patient and then we realize that their phone isn’t equipped to handle the televisit and that is kind of disappointing to find that out a minute before you try to connect then that visit becomes a telephone encounter, which is again, less satisfying for some patients. I mean it does the job, but again, it doesn’t provide me with the exam…part of the exam that I’d like to do, at least in that way. So, I think prepare yourself and make sure that your device is able to connect and actually most clinics will have a person that may be able to help you navigate through the televisit pieces that would help you get through and connect with the provider, and then obviously with an MPN or any other visit, patient with a heme malignancy, it would be helpful to make sure that you have a blood draw or if your physician would like to have a blood draw in my case, I always like to have a CBC beforehand or perhaps a chemistry or maybe ion studies or what have you, to have that so that there will be something to discuss and make sure that your physician has had those results before you have the visit. 

Sometimes it is also disappointing that the patient thinks I’ve received those results when I actually haven’t and I have no control over that, so that would be the other piece. All of us do our best so that we can make sure that all those pieces are in place so that we can conduct the visit. And I know it’s a lot of work on everybody’s part. But in the end, what matters is that we are providing the best care possible in those very challenging times.