LC TelemEDucation Archives

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit

September 20, 2021/in LC Programs, LC TelemEDucation, LC TelemEDucation Survivorship, Lung Cancer /by GIna Craig

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit from Patient Empowerment Network on Vimeo.

How can lung cancer patients optimize their telemedicine visits? Watch as lung cancer patient Jill shares her top tips for how to prepare for virtual visits and how to advocate for yourself when communicating for optimal care.

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Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

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Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

Transcript:

Jill:

One thing that someone else recently mentioned to me is to be patient with the doctor who might be late, and I don’t mind actually, the doctor’s late or early. I’ve had a doctor be up to half an hour early or up to an hour late, and that doesn’t bother me, I just go on living life and doing other things while I wait for the call, but I do book a bigger chunk of time on my calendar with the expectation that doctors are really busy people and they can’t always predict how long something else will go or what would come up, so it’s good to be understanding about it for sure.

It’s also helpful for me and a lot of people to write a list of questions, symptoms, and make sure that you get them all answered, so write them down and actually check them off, or cross them off while you’re in the appointment, because you don’t wanna walk away from there thinking, oh shoot, there was that one big question I had and some doctors are okay with getting an email or something between appointments, and some nurses are great to call, but not everyone has that opportunity.

So, I would say, make the most of your appointment just like you would in-person. Take good care to make sure that you’re advocating for yourself, and if the doctor says words after you ask your cost your question, you don’t feel like you understood them. Don’t be embarrassed or afraid or anything… just ask again, ask for clarification. Sometimes these doctors talk in big words, and my doctor has been great, my oncologist he would like draw pictures and I ask him often to write words down for me if I don’t know how to spell them because why would I know how to spell that? I don’t have a medical and oncology degree, so there’s no shame in asking questions, asking questions is smart, and it helps make us better informed, and it’s true that a better informed and a better-informed patient is a more empowered patient, and we tend to have better outcomes, when we know what’s going on in our treatment, so take the time to ask your questions.

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Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

September 20, 2021/in LC Programs, LC TelemEDucation, LC TelemEDucation Survivorship, Lung Cancer /by GIna Craig

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool from Patient Empowerment Network on Vimeo.

Can lung cancer patients look to telemedicine as a long-term tool in their care? Watch as lung cancer patient Jill explains how telehealth has been a benefit for her care and how it can serve as a benefit for other patients.

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Related Programs:

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

Transcript:

Jill:

In the future, I hope that telemedicine plays a really significant role in my care and in the care of others as well, so I would really like to not have to travel to my cancer clinic for every single appointment. For some of them, I definitely want to go. There are times when we want to look our doctor or nurse in the eye and really have strong, stronger communication, but for the most part, I would rather not have to travel and I live really close to my cancer center, so I always think about people who live farther away, and there are so many people who travel hours, there are people who travel days to get to their appointments, there are people who have to leave their communities and be, away for an extended period of time, and that’s not something that I would want to do, especially when we’re in a going counter treatment, we can feel so alone and fragile, and I would rather that people had more support and other people with them could stay at home, could stay in their communities and just have a call and their people could be with them if they wanted it during the call, they can all gather around and listen to.

And I think it matters so much. It’s not just convenience, it’s better care for people to have their loved ones near them, that’s one thing we’ve learned during COVID, even more so that it’s not good to be alone. It’s good to have our loved ones near us supporting us, and so as much as possible, if we can keep telemedicine as an option to use for the times when it doesn’t really matter if we’re in person or not, let’s make that choice, let’s make second opinions available let’s work out whatever permissions need to be in place for people to get care across regional lines or state lines, let’s get those things in place so that we can provide the best care possible, and let’s always be thinking about our most vulnerable people, and those are usually the people in the rural and remote regions, the people with a really hard cancer diagnosis, the people who are feeling alone and vulnerable, let’s take it, care of them.

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

September 20, 2021/in LC Programs, LC TelemEDucation, LC TelemEDucation Survivorship, Lung Cancer /by GIna Craig

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic from Patient Empowerment Network on Vimeo.

How can lung cancer patients stay hopeful during a pandemic? Watch as lung cancer patient Jill shares her advice on coping methods that have been helpful for her during the COVID-19 pandemic.

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Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Advocate Shares Why Telemedicine Should Be a Long-Term Tool

Transcript:

Jill:

These are really hard times, and we need to recognize that we’re not alone, that we’re not the only ones, we’re not the only one going through the hard time, and it’s so important to reach out to others, to reach out to someone, to ask for help, and we hear some really, really sad stories of things like people being turned away from the ER or we can have a lot of fear about what might happen. And I think it’s really important to not let those fears rule our lives, that can be really challenging to do, it’s very easy to say, but it takes a lot of skills to live without letting fear take hold at times. So, reach out for help. Talk to people, ask them, how do they cope? What do they do? For me, I talked to friends and my friends help remind me of what’s real and what’s true, my friends helped me hold on to hope. I’m a person of faith, so I believe in Jesus, and I read the Bible and I pray, and that really helps me too.

But each person finds their own ways to hold on to hope and let go of fear, and fear is, fear is not our friend. Good things don’t come from fear. So the other thing is we need to be advocates for ourselves, sometimes we need to ask for what we want, and if we believe in something, we need to fight for it, we can’t just sit back and expect things to be dropped in our lap, so they’re gonna be tons, when we’re going to have to really, really work hard, and that could hurt and in my life is an advocate, I find there’s a lot of pain and a lot of hard work, but there’s also a lot of real joy, and I get to meet some of the most amazing new people, and those are people who helped me have hope, so grab a hold of the people who help you have hope and don’t let go, call them up and reach out to them, lean on them.

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

September 20, 2021/in LC Programs, LC TelemEDucation, LC TelemEDucation Survivorship, Lung Cancer /by GIna Craig

Understanding Telemedicine Pros and Cons for Lung Cancer Patients from Patient Empowerment Network on Vimeo.

What can lung cancer patients expect for telemedicine opportunities and challenges? Watch as lung cancer patient Jill shares some situations telemedicine has served well and some patients who have run into care disparities.

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Related Programs:

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Advocate Shares Importance of Staying Hopeful During Pandemic

Transcript:

Jill:

Telemedicine offers some opportunities as well as challenges, so I’ll speak to some of the challenges at first, which are…we don’t in-person, tend to build relationships as quickly. In general, I find when we’re just talking over the phone, when we’re in-person, we can get to know each other more comfortably, for the most part, everyone is unique, so you could be different, but for me, the relationship-building aspect is something that I’ve missed out on to some degree.

And the doctor may miss some visual cues, so for example, there might be something that he or she would pick up on, would notice some sort of symptom or side effect that we had perhaps not noticed, we’re not, thought important enough to raise. So those are challenges. How do we get past not being able to see each other, so also, what if the doctor is delivering some tough news that could be harder to do if we’re not in-person, if we’re not able to see those visual, non-verbal cues, that can help us understand how to help the doctor understand how the patient is processing, receiving the news. Another thing is that sometimes patients, and I’m not going to say that I do this, but I’ve heard quite a few patients say that they might try to hide some of their side effects because they’re concerned that they’ll get a reduced dose and they’re concerned that it won’t be as effective.

Now, from what I’ve heard, you know I understand that’s not a really wise choice to make, but everyone makes their own choices, and so if the patient is trying to hide the side effects from their doctor and their nurse, it might be more helpful for that patient to actually be present with their healthcare team, so the healthcare providers can actually notice and pick up on things.

The opportunities are really powerful though, because it frees up so much more time for the system and generally, we often, I’ve had an awful lot of appointments, I know my oncologist quite well because I’ve had the same one since 2013, and we don’t need to talk for a long time, so usually 10 minutes is good and it saves the travel time in. Also, it opens up possibilities for remote consults with potentially anyone anywhere in the world, which is so terrific as an opportunity for a second opinion perhaps, or for someone who doesn’t have a doctor in their community, it makes it so much easier for them to gain access to care that they need.

And we really need to focus on the disparities that occur, especially people in rural and remote regions can miss out on some of the best healthcare. And if this is a great opportunity for us to serve them better.

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

September 20, 2021/in LC Programs, LC TelemEDucation, LC TelemEDucation Survivorship, Lung Cancer /by GIna Craig

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool from Patient Empowerment Network on Vimeo.

How can telemedicine serve as a vital tool in lung cancer care? Watch as stage IV lung cancer patient Jill shares how telehealth has helped her during the COVID-19 pandemic and how she views it in the future of her care.

Download Guide

Related Programs:

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

Transcript:

Jill:

I was diagnosed with stage IV lung cancer back in 2013, and prior to the COVID pandemic, I had never had a telemedicine appointment, but now that I’ve had quite a few.

I think they’re such an important tool in lung cancer care, especially during a pandemic, when they protect us from exposure to various potential infections, not just COVID, but it can protect us from illness, so that’s terrific. But also, they’re really convenient, I just have a quick 10-minute appointment, there is no waiting in the waiting room, there’s no traveling to the clinic, which is…I’ll be honest, that’s not a very big inconvenience for me because I live quite close to my cancer center, but especially for people in rural and remote regions, what a game changer it can be to just be able to talk on the phone or perhaps have a video chat with a health care provider. So, I think that telemedicine is a very important tool in lung cancer care, and I hope that it will continue, maybe not 100 percent of the time, but there will still be available to him after the pandemic is over.

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine

September 20, 2021/in LC Programs, LC TelemEDucation, LC TelemEDucation Survivorship, Lung Cancer, Patient Stories, PEN Blog /by GIna Craig

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Stage IV lung cancer survivor and nurse Gina has taken advantage of telemedicine opportunities in her care. Watch as she shares her perspective about the benefits of telemedicine and her hopes for the future. In Gina’s words, “..no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care…”

Download Guide

Related Programs:

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

Transcript:

Gina:

When it comes to telemedicine, I think that we have to think of it as an adjunct to care, so it wouldn’t replace your actual care with your doctor, and so I think that utilizing telemedicine would really just be kind of like getting a second opinion, getting somebody else to look at your case, and it would have been an opportunity really for you and your community doctor to work with an expert in the field, wherever, whatever disease state you’re being treated it with, and I think that’s one of the silver linings of COVID that we can use, so it wouldn’t necessarily be that telemedicine is taking over your care, but it’s really just an adjunct to your care. So, you would still be touched by your doctor, you still would be assessed by your community doctor, but that community doctor would be leaning on the expertise of the doctor in which you’re getting a second opinion or you’re consulting with…so I think that’s the way that we have to think of telemedicine and diversifying and really making sure that everybody has access to the best care, it’s not really in placement of your normal care, but just an adjunct, so in addition to your care.

One thing that I really hope that we can benefit from is…I hope that we can really learn from COVID. We learned that really there is a disease that is not defined by borders, and so I hope that we can use the opportunities and the things the way that we were, so I guess we persevered in spite of a disease, I hope we can use that for clinical trials to and so what I mean by that is I feel like the silver lining of COVID was telemedicine, and we were able to provide telemedicine to patients no matter where they were, no matter how they felt, they were able to have the best of the best care right in the comfort of their own home. And so one of the things that I actually personally benefited from was because of COVID, telemedicine was open up everywhere, and so I was able to actually get care from some of the best ALK cancer experts in Boston through telemedicine, and so I wasn’t actually required to travel to Boston instead, I could meet with that doctor by Zoom, and sadly, once the COVID mandates were lifted, that hospital was no longer providing telemedicine, so I was getting this great care, this expert advice in my disease process, and all of a sudden it was stopped, and so I hope that one of the things that we can do is figure out ways to utilize telemedicine to really bring the best care to patients no matter where they are in the United States or really…no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care, and I think it can be delivered through telemedicine.