Tag Archive for: Patient Empowerment Network

Are Mobile-Optimized Tools Impacting MPN Care?

Are Mobile-Optimized Tools Impacting MPN Care? from Patient Empowerment Network on Vimeo.

How is myeloproliferative neoplasm (MPN) impacted by mobile-optimized tools? Dr. Kristen Pettit from Rogel Cancer Center shares digital education resources and patient education websites to aid in MPN patient support and education.

See More From the MPN TelemEDucation Resource Center

Related Resources:

What Does Teleoncology Mean for Myeloproliferative Care?

What Is Chronic Neutrophilic Leukemia?

Understanding What ECG Monitoring Tools Mean for MPN Patients


Transcript:

Dr. Kristen Pettit:

There are a wealth of resources online in the MPN world, there are a number of different digital education resources that have expanded even with COVID, a lot of patient education materials that are out there on various different websites, from the Patient Empowerment Network to the MPN Research Foundation and MPN Advocacy & Education International.

There are also symptom trackers that can be very helpful to where you can enter your individual symptoms as often as you want to and get a more objective number to follow how you’re feeling over time and see how things may be progressing over time.

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Equity Rx, Cancer Care for the Whole Patient

Equity Rx, Cancer Care for the Whole Patient from Patient Empowerment Network on Vimeo.

What is culturally competent whole-person cancer care, and why is it important? How can patients maximize their well-being for the best possible cancer treatment outcome? A cancer survivor, naturopathic doctor, and public health scientist share solutions on how the whole patient should be considered in cancer care.

See More From Rx for Community Wellness

Related Resources:

Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?


Transcript:

Dr. Nicole Rochester:

Hello and welcome to Equity Rx, Cancer Care for the Whole Patient. I’m your host, Dr. Nicole Rochester. I’m a pediatrician and the CEO of Your GPS Doc. This is a Patient Empowerment Network program, and I’d like to start by thanking our incredible partners, Triage Cancer, the Leukemia and Lymphoma Society, and CancerGRACE for their support. Today, we’re covering a very important topic, the significance of treating the whole patient while providing medical care, particularly for underserved communities. For me, when we think about self-care in the context of whole person care, it’s often considered to be a luxury, particularly in BIPOC communities, mental health and self-care are not always prioritized, and we know that this is… And we know that this is important as well for those with the cancer diagnosis, so how do we change that? We’re going to be talking about how to remove this taboo and how to encourage meaningful mind-body connections, we’re gonna talk about what has worked and what hasn’t worked, and most importantly, how do we ensure that Equity, Rx in cancer care occurs on an everyday basis.

How do we make sure that the entire patient, the whole patient is considered. I’m excited to introduce our panel to you today, we have Aswita Tan-McGory. She is the director of Equity and care implementation at Massachusetts General Hospital. She’s also the Director for the disparity solution center. We have Sasha Tanori. Sasha is a Patient Empowerment Network, AML Empowerment Lead and a cancer survivor. And we have Dr. Broderick Rodell He is an educator, a doctor of naturopathic medicine, and a wellness expert. Following this program, you will receive a survey and we’d be delighted to get your feedback, this helps inform future programs that we produce. Please remember that this program is not a substitute for seeking medical care, so if you have any questions following this program, please be sure to connect with your healthcare team on what options are best for you.

So, let’s start with a definition of whole-person care. Whole-person care is defined as the patient center, optimal use of diverse health care resources to deliver the physical, behavioral, emotional and social services required to improve the coordination of care for patients, their well-being and their health outcomes. So, I’d like to start with you, Aswita and I’d like to know your thoughts on Whole Person Care, and why do you think that this has been such a taboo subject for so long, and also why is it important for us to address whole person care?

Aswita Tan-McGory, MBA, MSPH:

I think that part of the problem is that our healthcare system is very, very fragmented, so if we think about… We have primary care, then we have specialty care, then we have care in the hospital, and oftentimes there’s no communication or communication is sort of inconsistent between those pieces, and so we as a healthcare system don’t promote this idea of whole person care, where you would really look at a patient, see them, see them in their environment, oftentimes, we’re seeing patients in our own institutions and we really don’t know anything about what we’re sending them home to, right? Unless we ask or we screen.

So I actually think it starts with how we build our systems in many ways, as a very sort of system that doesn’t really work to encourage thinking about the patient in the whole way, and that means the primary care physician being part of the care team with specialty care, getting that conversation just from an implementation perspective, I think this is a real challenge in our system, there’s other things as well, but I think that’s a big piece towards how do we ensure that for the patient… And I’m sure all of us have had our own experiences in healthcare where we are like, they’re not talking to each other. Well, why does this this doctor not talking to my primary care doctor aren’t they like logging into the same system? And then if you go outside of your system it’s even more challenging, so.

Dr. Nicole Rochester:

I completely agree, and I can relate to every single thing you said as both a position and as a former caregiver, I will say as a pediatrician, I felt that this idea of whole person care, even before it was really a thing that’s kind of incorporated in our practice out of necessity, and we know that it’s important for the health of children to be involved in what happens to them at school and what happens to them in their child care setting, what’s happening in their homes.

And so that was kind of my reference point, but when I became a caregiver for my dad and kind of stepped into the world of adult medicine, I experienced exactly what you describe, Aswita. Just this fragmentation providers not talking to one another, and just a lack of appreciation for the importance of our environment and the things that we’re exposed to in our homes than in our communities, and how that is so intricately connected to our health. So I really appreciate that.

Aswita Tan-McGory, MBA, MSPH:

Yeah, I want to just tag on something you just said is, I work with a lot of pediatricians and pediatric hospitals, and they are the angels in our system, if I can say so, you… And they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on, so I totally agreement, like what you said, and I think it’s because you’re working with kids, you can’t not talk to the parents, not think about what is the school like you know so your forced to because of that environment, but that’s really a model that we should be using for all of our patients.

Dr. Nicole Rochester:

I completely agree, completely agree. Sasha, what are your thoughts about whole-person care and where are your providers gotten it, right, maybe where have they gotten it wrong?

Sasha Tanori:

For me personally, I can’t speak on every Mexican-American, but at least for me personally, it’s definitely been a struggle because where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that, so getting care is… It’s not the easiest. I’ve had to go to several doctors before I even got diagnosed, and I didn’t even get diagnosed in my hometown, I had to be sent to San Diego because they had no idea what was going on. They were like, We don’t know what’s wrong with you. Go home, they kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican-American, they were just like, Oh, if you lose a couple of pounds, you’ll be fine, and I show up at the hospital with bruises on my body and they’re like it’s because you’re overweight, and I’m like, That doesn’t really make a whole lot of sense. So yeah, it was definitely difficult trying to find a good health care professional who would listen to me, and I had to leave out of my Imperial Valley, out of my demographic to go find the help because…

And even then, they were kind of like, Well, it could be this blood disease, it could be this, it could be that, and they were like, Oh well, is anyone in your family… You’re Mexican, is anyone in your family have this type of illness, do they have diabetes, or this or that. And I was like, No, just help me. Don’t worry about them. Don’t worry about my family. Don’t worry about them. Worry about me. And finally, I think after two months or something of just going to doctor’s appointments, after doctor’s appointments, they finally were able to give me proper diagnosis, but it shouldn’t have to take that many trips to the hospital and seeing this many doctors for them to figure out what was wrong. And a lot of it is because of, like you said, it’s because of the whole inequity of being a person of color, and I’m only half Mexican, but a lot of people see that part of me first, and they think they automatically start being prejudiced or they start judging you based on the way you look, the way you talk and stuff like that, so that way… It’s definitely been a struggle, especially being here in the Imperial Valley, we’re so close to the Mexican border, so they just automatically…They’re like, No, it’s just straight up, no.

Dr. Nicole Rochester:

Wow, I’m really sorry about that, and I appreciate you sharing your story and you’re bringing up some things that we’re definitely going to get further into as we start to talk about bias and culturally competent care. What about you Broderick? And You’re a naturopathic physician, you’re a wellness expert, so you probably fully… Not probably you fully understand the importance of whole-person care, I feel like that’s at the root of your specialty, so maybe you can give us some ideas about how you approach this and why whole person care is so important.

Broderick Rodell:

Yes, thank you. And I do fully understand the various issues and concerns that can arise when you go to a medical doctor and the specialist and not talking to your primary care physician, and so I focus a lot of my attention on the individual and what you can do as an individual to care for yourself, to educate yourself about well-being and help, it doesn’t deny the various social conditions or structural issues there, it’s just that I feel like we have our greatest amount of power, a great capacity to act and taking as much responsibility as we possibly can in our own care through educating ourselves about how our bodies work, how our mind works, how disease manifestation arises, taking advantage of the tools that we have available to us via the internet and educating ourselves so that we can be advocates for ourselves when we have a conversation with the various medical practitioners, but I’ve also really emphasize what can I do to maximize my health, my well-being, what choices can I make in my life to make my life to no life with maximum wellness and well-being and minimal suffering. And I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities and not give too much power over to medical doctors on a medical system that not always…

Now, I wanna say, I’m gonna be careful, I say this can be quite incompetent and that incompetence is associated with, I think what was mentioned earlier, a lack of communication. A lack of communication, the way the system is set up, it’s kind of dysfunctional and the various incentives and not enough time spent with patients, and if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not gonna have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.

Dr. Nicole Rochester:

I completely agree, Broderick the ideas that you mentioned in terms of we as patients and family members and communities educating ourselves about our own health and advocating for ourselves as someone who left medicine to become a professional health advocate, I’m all about advocating for yourself, speaking up, understanding what’s going on with your body? And I know that that can be challenging. And some people feel like it’s unfair, if I’m sick, the last thing I should have to worry about is fiercely advocating for myself in a medical setting, and it is unfair to some degree, but as you stated in this system and the system that we’re currently operating in it is absolutely necessary, and I love that you mentioned mind, body spirit, and as a traditionally trained physician, I will admit that we don’t get that connection, that’s not something that is part of our traditional training, and it’s unfortunate that we kind of just see the body over here, and then the mind over here, and we know that we are all… This is all part of who we are, and that if your environment is not optimal, if your mental health is not optimal, if your spiritual health is not optimal, then that’s going to manifest itself in your physical health.

I wanna start talking about health inequities, and I wanna piggy-back off of something you just said, Broderick, because you talked about kind of eating well and exercising, and sometimes those things, those behaviors are kind of weaponized against patients, particularly if they are in environments where that doesn’t just come easy. So we know that due to structural racism, due to inequities, not everybody has access to fresh fruits and vegetables, healthy foods, not everyone has access to green spaces, nice parks where they can go outside and safety and exercise, and that’s something that we’re being made increasingly aware of is how these social determinants of health impact healthcare. So I wanna move and start to talk about the importance of culturally competent care, or I like to call it cultural humility, I don’t know that we can really ever be competent in someone else’s culture, but I wanna talk about how those come together, this idea of being respectful and sensitive and aware of individuals culture and how that connects to some of the health inequities that we experience, so Aswita, I know this is an area of expertise for you, so I’d love for you to chime in.

Aswita Tan-McGory, MBA, MSPH:

Yeah, I mean, I would love it if every physician or nurse or PA started the conversation, what has been the biggest challenge for you in the last six months? If you ask that question, I mean, well the patient will be like, Oh my God. And not around just medical issues, they all align right? If you don’t have housing, you’re gonna have medical stress, like Broderick said. I’m just calm listening to you, so I’m gonna guess that you have is really positive vibe that’s probably missing for many of us because we aren’t practicing the things that you encourage, and so I would just say that it’s really difficult in the system like I said, we set up, and we mentioned 15 minutes, doctors don’t feel like they have time to ask that question, but you’re doing it in other ways, we implement social determinants of health screening. Well, that’s really that question, right. But you formalize it because it’s not happening, so now it becomes like a screening question, and I will just say that we’re very narrow-minded in our view, I think I have seen a change in the very beginning when we started the work in our center in 2006, a lot of pushback was around thinking about what happens in the patient outside of our walls, it said, Well, I didn’t go to medical school to solve the problem of housing, I didn’t go to medical school to figure out how to get somebody on benefits, and I think health care system realized it doesn’t matter what you do in the hospital, it will be undone when they get home to a situation where they can’t maintain it, they can’t provide that support, they don’t…

They’re stressed out, they have mental health issues, so I think they’re finally getting there, but I think just acknowledging that the person in front of you has different experiences based on, language, education, gender, ability, sexual orientation… I don’t think that’s a bad thing. I think you just need to own it, we’re working on it, so I do it better than others, but I don’t know any healthcare system, honestly, that’s nailed this to the way that we probably should, so… I’m with you Broderick, we don’t do this very well, and most of my job includes dismantling these systems that we built to benefit the people in power and leave everybody else behind, and so that’s been really the focus in our work.

Dr. Nicole Rochester:

Wonderful, thank you so much for sharing that. And for all the work that you’re doing in this area. Sasha, from your perspective, and you mentioned you’re a Mexican-American, you mentioned that there were significant barriers for you in terms of getting a diagnosis, having to leave your community. So, I love for you to share more about that, this idea of cultural humility, cultural sensitivity, and how that played out or maybe didn’t in your experiences with the healthcare system.

Sasha Tanori:

Yeah, I live in the lowest poverty line of California, so there’s not very much out there at all in my area, just to get my diagnosis, like I said, I had to leave out of my community to go get the community… To go get the diagnosis. Sorry. And when I did that, it was… A lot of it had to also do with your… For me personally, it has to do with like generational. My father doesn’t believe in diagnosis, diagnoses, to him, it’s like every time I kept coming to him and complaining about this issue, he was just like, Oh, you’re exaggerating, or it would be like the typical inaudible],  and put some Vix on it and you’re fine type of response, and I kept bugging him and bugging him, and he didn’t believe me, nobody believed me because it’s just such a… Like I said, I live in a… What’s the word I’m thinking of, I’m sorry. I live in a community that they don’t take things like this seriously from Mexicans, if a white girl was to go to the hospital and say, Hey, I’ve got bruises, it’s like, Okay, let’s do testing right away, but I kept… And it is a lot of my generational, I think, trauma from my parents or from my dad mostly, that I didn’t even believe myself, it’s just like…

I kept putting it on the back burner. I kept thinking, No, there’s nothing wrong. No, there’s nothing wrong. No, there’s nothing wrong. And I wish that I would have advocated for myself a lot sooner, I wish that I would have taken my own problems more serious because I didn’t… I didn’t think anything was on either, I just kept ignoring it because that’s just how my mind was trained from my community, from my parents or my dad mostly, and finally, once I was able to… Once I started getting really, really serious, I still didn’t get the help, I need it right away, it was now kept pushing it back on, you need to lose weight, or you’re anemic, or you have this blood disorder, so take this medicine, like nobody really took anything… I was saying serious because I also didn’t take it serious, my community doesn’t take it serious, my dad doesn’t take it serious, and that all just comes back to being Mexican, that’s just how it is when you’re Mexican, you don’t really take any of the serious issues serious, you go to work and you take care of your family. And you put yourself on the back burner.

You put yourself last. And it was really hard. Yeah, but now that I been through everything I’ve been through, I’m seriously, so passionate about making sure that people, especially Mexicans realize, Hey, whatever you’re feeling, whatever you’re going through, whether it’s physical, emotional, mentally, it needs to come first, no matter what.

Dr. Nicole Rochester:

Thank you, Sasha. That is so incredibly important, and even the way you’re sharing what you said towards the end about, You go to work, you take care of your family, this all goes back to cultural competence, all goes back to social determinants of health. It explains why often, racial and ethnic minority groups, those in lower income brackets have poor health, it’s not biology, but when you are needing out of necessity to focus on your next meal, then you’re going to push off going to the doctor, you’re going to neglect your mental health, which brings me back to you, Broderick, because we know that stress and anxiety and depression and all of those things impact your physical health, and as I said earlier, I think traditionally, there’s been this ridiculous disconnection between our minds and our bodies, and we know a lot more now, in fact, there’s a study, there are many studies, but there’s a study specifically looking at Prostate Cancer by Dr. Burnham, a researcher, and what they found in this study is that they looked at prostate cancer cells from African-American patients and white patients, and when they treated these cells with stress hormones, they saw that the black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy, and so it starts to look at the role of stress and stress hormones, and we know that there’s increased stress among minority communities, among… Sorry, urban communities, those who are otherwise disenfranchised, so from your perspective, can you just share a little bit about the connection between stress and physical illness and maybe how you approach that in the work that you do?

Broderick Rodell:

Yeah, so I’m just reflecting on what Sasha was saying and how the depth of what you’re saying and how this relates to stress. So these various patterns we don’t operate, we have a framework that we all operate from, and it’s beneath the surface of our conscious awareness and so our subconscious mind operating system is there, but that operating system comes from our conditioning, we’re conditioned by our families, by our local communities, our societies, and so the various structures that are in place are facilitating our conditioning and from our conditioning we… That our conditioning creates our perspective, the framework that we operate from, that’s determine… That’s gonna determine how we relate to our experiences, and how we relate to our experiences can be gracefully or it can be stressfully, just to put it in those two different terms, and so that stress, that is created based on how we’re relating to our experiences has a historical perspective, and so we have to address those issues. We can address on familial issues that has a historical relationship and say that maybe the relationship that my mother and father or grandparents had towards their own health is not necessarily to be the most optimal way to do that, and they may have had those ways of relating to their experience, based on their conditioning, based on the suffering that they’ve been experienced, environmental conditions that were conducive for that mental framework that they’re operating from, and so we have to work towards transforming that, and again, the place where we have the most power in ourselves, How can I change myself? When I listen to Sasha story, Sasha says, I have to change, I have to go somewhere else.

I can’t depend on my father to do it ’cause he’s gonna tell me to put Vix on, but that’s not gonna work for me. I have to advocate for myself, and so how do we increase that by increasing our education and learning about ourselves and learning about our mental models that we’re using to relate to our experiences and transforming those mental models to reduce unnecessary stress and tension, because when we’re under unnecessary stress, we have our epinephrine cortisol, these hormones that are increasing in our body, that’s gonna suppress our immune system. It’s gonna cause damage in our blood vessels, organs are not gonna function optimally, and I think that we’re gonna keep finding out more and more about this. I was interested, as you hear that about the prostate, prostate cells in African-Americans, why would that be the case? You’ve got generations of hyper-vigilance for historical reasons, cultural reasons or social reasons, then of course, that’s gonna get passed on from generation to generation, a sense of hyper-vigilance a sense excessive amount of stress hormones was floating around in the bloodstream, and it’s gonna have a significant influence on how the body is capable of dealing with various illnesses be it cancer, be it cardiovascular disease or any other disease that’s associated with, or ____ disease that’s associated with stress these days.

In particular, with cancer it’s very interesting, that relationship and why are these cells dividing and rapidly producing in the way that they’re doing, and how is that related to stress? I don’t think it’s… No, simple relationship there. You can’t just say, Stress causes cancer, I’m not saying that at all. But there is a correlation, there is a relationship, and if the thing that we can tackle, we can’t change our genes, but what we can do is change our relationship to our experience. Transform that to reduce the amount of stress or suffering and maximize well-being, and that’s the kind of work that I try to focus my attention on and what comes out of that is, Okay, I need to work on how I relate to my experience, but also How do I create favorable conditions in my internal system, in my body through the food, it through the exercise that I do it, through the literature and I expose myself to etcetera.

Dr. Nicole Rochester:

No, that was perfect, Broderick. That was perfect. I appreciate that because as we wrap up, we want to start to share solutions, how do we begin to change the conversation among healthcare providers, among community-based organizations, policymakers, those that influence the health of individuals and communities, and what you’ve described is what we can do. The power that we have within ourselves to reframe how we look at our circumstances, to reframe how we relate to our experiences to begin to minimize the stress to the degree that we can individually and how all of that really impacts health. I really, really appreciate those comments. Sasha, I’m going to go to you next and then I’m going to finish up with Aswita. If you had some advice that you could give from a patient’s perspective, and maybe you’re talking to a policy maker or healthcare providers, but how can we do better in this area as it relates to Whole Person Care, culturally competent care?

Sasha Tanori:

I would definitely say take your patients more seriously and not just like one-offs, okay, bye. A lot of the times they just do a couple of tests and they’re like, Oh well, we can’t find anything, so let’s just move along and there needs to be more conversation as well.

A lot of the doctors will come in and talk to you for like you said, 15 minutes, and then it’s like, Okay, you know, well, we can’t find anything wrong, so just go… And it’s like, No, let me explain everything, let me explain how I’m mentally feeling, how I’m physically feeling, how stressed out feeling, how emotionally I’m feeling, and there’s just so many different layers to just one, if you come in and say, Oh, well, my hip hurts. Okay, but why I explain more to it, not just okay let’s do an x-ray and you leave. Like there needs to be a lot more conversation going on between the patient and the doctor, there needs to be a lot more understanding where it could also be stress as it relates to work, it could be stress related to family, to love the ones… To kids, to spouses, there’s so many different things on top of that, that’s more than just, you know, Hey, you know like, I just need a prescription and you can go… There’s so much more conversation needs to be have then I really wish that a lot more health care providers would have that conversation with them, I know they don’t always have the time, they’re busy, but at least a little bit more compassion, a little bit more understanding, going about when it comes to patients.

Dr. Nicole Rochester:

I appreciate that, and you’re right. The time is an issue. And I will tell you as a physician and as somebody who has tons of physician friends, it causes internal conflict within the doctors, because I don’t know any doctor that got into this for any reason, primarily, other than to help patients, and so to be placed in these situations where you know that you’re falling short of providing the care that your patients need is actually quite disturbing. So that leads me to you, Aswita. So we’ve talked about all the things that need to happen in an ideal world, but as you described earlier, the system in which health care is provided in our country is dysfunctional, it’s broken, and so as someone with your background, what are some of the solutions? What are some of the things that healthcare systems and organizations can do with all these limitations that we’ve all been talking about today?

Aswita Tan-McGory, MBA, MSPH:

This actually came from my colleague who’s a psychiatrist, and we did a webinar together, and she mentioned this, and I just really loved it as a solution which is talking as a pathway to healing, when we think about… A lot of what I heard today, the big thing is a lack of trust between a patient and a provider or a patient and a health care system, there was so much trauma in our communities that we don’t talk about, and so I would say that like…

One solution is, we as a system need to talk about these challenges more openly or more… I mean I have this sign behind me it says get comfortable being uncomfortable to talk about racism, but I think also within our own communities, we need to talk more about the challenges, the things that we just sort of tolerated that are not okay anymore, and getting mental health care, acknowledging that we are disproportionately attacked when we go out on the streets, all of those things, we need to more openly talk and that is a pathway to healing, which I think this country really could use, and so my solution is simple but difficult, but probably cheaper than any other solution that I would offer to fix the issues. I think we just need to start there, yes, we can do many things, but I think talking about this as a pathway to healing would go a long way.

Dr. Nicole Rochester:

Wow. Talking as a pathway to healing. That is powerful. Well, I want to thank all of you for spending some time with me today, this has been a phenomenal conversation, one that I’m sure we could all continue for hours and hours and hours. But unfortunately, we do have to go.

I want to thank all of you for taking time to be part of this Patient Empowerment Network, Equity Rx webinar. Just to give a recap, we’ve learned about the importance of culturally sensitive Whole Person Care, how culturally competent or culturally sensitive whole person and care is important in reducing health inequities, we talked about how stress impacts lifestyle and cancer and all other chronic diseases, and we’ve also tried to provide you with some actionable pathways and potential solutions to this problem, it is truly these actions that are the key to staying on your Path to Empowerment. I’m Dr. Nicole Rochester, thank you for joining this Patient Empowerment Network program.

About Patient Empowerment Network (PEN)

Founded in 2009, Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization working on behalf of cancer patients and care partners. For more than a decade, we’ve been improving treatment outcomes and health equity for cancer patients and care partners at every step of their journey. PEN was founded by a chronic lymphocytic leukemia (CLL) patient, and over time we’ve dramatically expanded the cancer types for which we provide resources and support. Here’s a closer look at our origins, mission, programs, and goals for the future.

Origins and Vision of PEN

Unfortunately, a cancer diagnosis can overwhelm both patients and their loved ones. The need to take control after cancer diagnosis provided the seed, and the idea for PEN was born. With patients and their families in mind, we embarked on a path toward empowering them to ask the right questions at the right time for improved care. With this empowerment, patients and care partners built their health literacy to make informed choices in shared decision-making along with their care team.

PEN Mission

With that vision in mind, we penned the mission statement to guide the work ahead. Our mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcome.

How PEN Is Different

So how does PEN differ from other cancer advocacy organizations? At PEN, we take patient education a step further; we educate, then ACTIVATE cancer patients and their care partners to become shared-decision makers with their healthcare teams. By insisting on the most current and personalized care available, empowered patients achieve better treatment and health outcomes.

PEN Programs

With a wide array of content, our programs enhance patient health literacy to enable shared decision-making and to provide informational and educational resources to empower patients and care partners at every step of their cancer journey.

In 2020, we adopted the Path to Empowerment Framework to guide us in empowering patients and care partners along this journey. We know not everyone’s experience with cancer is the same, there are commonalities. Based on the National Cancer Institute’s Cancer Experience Map, we have outline six commonalities. Within the framework’s six categories, you’ll find easy-to-understand and reliable information.

Path to Empowerment Framework

The Future of PEN

We are on track to serve over 200,000 patients and care partners in 2021. And in the future ahead, we aim to continue empowering patients and their families with knowledge to improve their treatment and health outcomes; build key strategic partnerships to expand into additional disease areas, expand the reach and visibility of PEN content; and locate and build additional funding resources. With these goals in mind, PEN can continue fortifying a sustainable future of serving and empowering patients and care partners toward optimal care and health outcomes for all.

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia (CLL) patients, telemedicine has emerged as an option that requires new ways of working with their health team. Watch as CLL expert Dr. John Pagel shares his advice to patients and caregivers for getting the most out of telemedicine visits.

See More From the CLL TelemEDucation Empowerment Resource Center

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Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

What CLL Symptoms Can Be Monitored via Telemedicine?


Transcript:

Stephanie Chuang: 

You had mentioned, patients need to be prepared when they come to their telemedicine visits, doctors have limited time, of course. So what are your top three tips or so for patients and their caregivers who are preparing for their telemedicine visit?

Dr. John Pagel: 

So here’s a good important thing to say around that. Number one, you know, what happens is you’ll get told you have a telemedicine visit at 10:00 AM on Tuesday. And so you’re looking forward to 10:00 AM on Tuesday. And 10:00 AM comes around, and you’re waiting by the phone, and it doesn’t ring immediately, or the Zoom doesn’t come up immediately, please understand you have to be a little bit flexible with your physician. Just because it says that time…it’s the same thing kind of like in the clinic, it all kind of flows and works together. And so please be flexible and be patient. Not accepting excessive delays, that’s not really cool, we get that, but it’s often very hard to be right on the dot at 10:00 AM. So number one, be flexible. Number two, have your questions written out or focused about what you want to learn and understand that visit. It may not be a lot different than the last visit, that’s okay. But if you don’t have those, often, what will happen is that when the visit’s over the phone is hang up or the Zoom call is put away, you’ll remember, “Oh, I forgot to ask X, Y, or Z.” don’t let that happen.

And the way you don’t let that happen is to be focused there with what you want to learn. And then lastly, if it’s possible, don’t be excessive. Meaning that, focus on the things that are important, meaningful, relevant to what’s happening to your health, your disease in your interaction with your physician. There are things that we all can list that could be very, very long in the list, but many of them aren’t going to be something that the physician can get to in a very meaningful, important way. Ask though, if you can’t get to those things that are important, that you try and follow up with them very quickly, perhaps in another visit relatively soon. But keep your expectations, if you could, to a very realistic approach, directed and focused on taking care of you and managing your CLL. 

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients? from Patient Empowerment Network on Vimeo.

With telemedicine as a part of the chronic lymphocytic leukemia (CLL) toolkit, what will its role be in the future? Watch as CLL expert Dr. John Pagel shares his viewpoint of how telemedicine will play into long-term survivorship care for patients.

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What CLL Population Will Benefit Most From Telemedicine?

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What CLL Symptoms Can Be Monitored via Telemedicine?

 

Transcript:

Stephanie Chuang: 

We really haven’t scratched the surface, it seems, when it comes to using telemedicine as a long-term survivorship tool. So for the sub-group of CLL patients who never need treatment, does telemedicine still bring any major advantages?

Dr. John Pagel:

There are people, and it’s not uncommon, who actually never even get treated. I’ve had people in my clinic who have had CLL diagnosed and never treated for over 20 years or more. It does happen. And those people often can be managed with their primary care physician, even though it’s good to have a CLL focused clinician, an oncologist or even expert in their back pocket, but they may only need to have that televisit with that expert or oncologist once a year. So those are the ideal kind of patients who it’s not great to drag them in if there’s nothing going on with them, but they still need to be evaluated and have a discussion about what’s happening, at a minimum once a year in many cases. 

What CLL Symptoms Can Be Monitored via Telemedicine?

What CLL Symptoms Can Be Monitored via Telemedicine? from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia (CLL) patients, some symptoms can be monitored via telemedicine, while other symptoms are best to check in-person. Watch as CLL expert Dr. John Pagel discusses getting optimal care by CLL symptom type.

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What CLL Population Will Benefit Most From Telemedicine?

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Will Telemedicine Be Part of Routine Management for CLL?

 

Transcript:

Stephanie Chuang: 

There are CLL patients on specific treatment protocols and those who need follow-up for potential adverse effects of treatment compliance and, of course, progress. And so the question is, how effective of a tool is telemedicine for this group?

Dr. John Pagel: 

I’ve been very impressed that we can meet the needs of patients, we can meet the needs for clinical trials. Clinical trials have really adopted and been flexible with the idea of being able to do telemedicine in a large degree because of COVID in CLL. And I would say clearly that a conversation and close discussion with the physician’s critically important, it comes back to what we mentioned specifically, it’s about education. Patients need to understand that if they’re not feeling well, meaning, they’re having drenching night sweats or they’re losing weight or they’re having pain, those aren’t things to sit back and just wait for your telemedicine visit, they need to contact the physician and to be able to be seen urgently or quickly if needed. 

Telemedicine is going to be a bridge to make that happen, but in general, those are people that are in a bit of a different class of what we’re discussing here today. So monitoring disease, taking care of people with regard to assessments of their blood counts can be done all again through telemedicine, but more acute problems, those patients do, of course, need to be seen. 

Telemedicine Challenges and Opportunities for CLL Patients

Telemedicine Challenges and Opportunities for CLL Patients from Patient Empowerment Network on Vimeo.

For chronic lymphocytic leukemia patients, some challenges have emerged with care via telemedicine. In this telemEDucation program, CLL expert Dr. John Pagel explains opportunities for patients and providers to optimize these visits.

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Transcript:

 Stephanie: 
Let’s highlight both the challenges and opportunities that come with telemedicine. So first, it does seem to be reshaping the traditional CLL doctor-patient relationship to some extent, and you’ve touched on this. So with your experience as a CLL expert, what are the limitations of telemedicine?

Dr. John Pagel: 
Well, one of the, of course, things about telemedicine is it’s not just figuring out how to do it from the provider’s standpoint, but it’s also figuring out how to do it from the patient’s standpoint. So we can’t expect, to be honest, that this goes just like it would if you were in the clinic, sitting on the exam table with your physician there at the computer right next to you in that exam room, it shouldn’t be expected that it’s going to go like that. And unfortunately, to this point, we’re trying to figure out that. It doesn’t do that. And so that takes some alteration in our approach, on the provider’s side and on the patient’s side as well – and in particular, what the expectations are for these patients and for the providers.

So it needs to be very focused, and it needs to be concise. So what is my message there? For the patient’s side, know that the doctor’s busy, they’re doing their work all day long with lots of sick people potentially, and so they need to be very focused on what the issues are and the direction of the conversation. So come prepared to a telemedicine visit, if you’re a patient. Come prepared to know what you want to talk about and what the focus is with the priorities that you might have that are issues for you around your CLL disease. And the provider will do that hopefully as well. It’s a learning thing. But I will tell you, the first time will take a little bit of learning. By the second, third time that you’re actually interacting with your doctor, that same one-on-one relationship, it really

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

Will Telemedicine Mitigate Financial Toxicity for CLL Patients? from Patient Empowerment Network on Vimeo.

The cost of chronic lymphocytic leukemia (CLL) care can be inappropriately high for some patients. Watch as CLL expert Dr. John Pagel details how telemedicine can affect the high cost of care.

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Transcript:

Stephanie: 
Dr. Pagel, we know the stresses of paying for cancer treatment. So how can maybe telemedicine help to mitigate financial toxicity for these countless CLL patients and their families?

Dr. John Pagel: 
Well, this is an important part of medicine in general, and it’s certainly relevant, of course to the CLL patients. The cost of care is inappropriately high, not just the pharmaceutical agents, but, of course, the visits. So there are evolving ways of figuring out how reimbursement will happen for physicians and how payments happen on the side of patients. We’re still not completely clear on that, but likely what will happen, over time, is that we will be doing less and less unnecessary tests. And with less unnecessary tests, the cost of care will go down for the individual specific community and patients. It’ll be very important for us to figure out what we really need to be doing and what we don’t, and telemedicine’s going to help us figure that out. 

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future? from Patient Empowerment Network on Vimeo.

Will telemedicine play a greater role in CAR T remote monitoring and help some CLL patients avoid long hospital stays? Learn how harnessing technology could optimize care for CAR T patients.

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Transcript:

Stephanie: 

There’s excitement around telemedicine and CAR T, so specifically remotely monitoring CAR T to help avoid patients having to deal with long hospital stays. Is this the future?

Dr. John Pagel: 

It’s clearly the future. So what you’re alluding to, of course, is a way that we are now doing to trick a patient’s own immune system cells into targeting and fighting the cancer, and of course, we’re talking about CLL here. It’s a revolutionary treatment in CLL, we still have quite a ways to go, we are doing a lot of important trials and advancing the field, but we don’t have an approved approach in CLL yet, but we will. No doubt. And the goal of that therapy is not just to eradicate the disease and keep it from coming back, but it’s also to do it in a very safe and actually appropriate way, and that’s as an outpatient.

Those patients clearly have risk for an adverse event or a side effect, that can be problematic. So they have to be in close contact with a physician and sometimes they’re required to be very close to the treating center for prolonged periods of time. Most of the time that’s very uneventful. So it’s a major disruption to a patient’s life. You could imagine that you’re traveling hundreds of miles to go to a center, and not just go to a center that provides the CAR T-cell therapy, but is actually monitoring you for a month or more, so you’re away from home for a long time, living in a hotel, that’s a problem.

Telemedicine is a way to get around that. We will evolve to being able to treat patients, get them home, and then telemedicine will work where the visits can be done in a very expeditious manner, and again, in a very appropriate way so that that will also reduce the interactions away from home, and as we said cost of care as well. 

What Subset of CLL Patients Should Utilize Telemedicine?

What Subset of CLL Patients Should Utilize Telemedicine? from Patient Empowerment Network on Vimeo.

With monitoring of chronic lymphocytic leukemia (CLL), there is a subset of patients that will get the most benefit from telemedicine visits. Learn more about which CLL patients should use telemedicine and which higher risk patients should still visit in-person. 

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Transcript:

Stephanie Chuang: 

Can you share the telemedicine platforms that you, in your practice, use and maybe so far, what are some of the best practices observed?

Dr. John Pagel: 

Right, and I think that’s probably the biggest key and takeaway that we can talk about here for the audience, is to remember that telemedicine isn’t going to be appropriate for every patient. And for each individual patient, there are times where it certainly would be very appropriate and other times where it might not be. So, you know, of course, people that have active, growing, rapidly progressing disease, we’re not talking about those people, those people need to be seen by their provider, they need, of course, close attention and monitoring. But many, many patients, in fact, the majority of patients with CLL are not in that kind of group.

So we’re talking about people that don’t have high-risk genetic features, in particular, those are things like a deletion of the short arm of chromosome 17, that’s a 17p deletion, or an 11q deletion or a TP53 aberration, those are genetic risks that your doctor will know about with regard to your specific individual CLL. And most people, fortunately don’t have those features and they behave in a very indolent, slow growing, more benign-like fashion, and then those are the people where probably telemedicine would be appropriate for many visits.

I’ll just say, I would suggest that in general, telemedicine shouldn’t be something that you do with every single visit. Every once in a while, you should have that face-to-face, hands-on interaction with your primary provider. But I’ll also remind people that not everyone lives real close to their oncologist or even their CLL expert. So if you’re far away, you can connect not just with your oncologist who takes care of you, but with an expert who might be some distance away, and that’s the beauty I hear about the telemedicine.

Will Telemedicine Be Part of Routine Management for CLL?

Will Telemedicine Be Part of Routine Management for CLL? from Patient Empowerment Network on Vimeo.

With the COVID-19 health crisis, telemedicine has emerged as part of routine healthcare. Watch as CLL expert Dr. John Pagel gives his viewpoint on how telemedicine will be included in routine management of CLL. 

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What Subset of CLL Patients Should Utilize Telemedicine?

 

Transcript:

Stephanie: 

You know, of course, COVID-19 has forced healthcare providers to use telemedicine more than ever before, so do you think this will definitely continue on past COVID-19? And if so, how quickly it will even grow?

Dr. John Pagel: 

Well, I think the federal government’s understanding that this is a part of medicine moving forward that’s important for patients, patients like it, and I don’t blame them. If I’m on that side of care, I feel perfectly fine, I have CLL, let’s say, and nothing’s going on with me, and I’m very well-educated about my disease, and by the way, that’s probably critically important to this whole conversation is to understand and be educated well about your specific disease.

Remember, each patient has to be their own best advocate. And that makes telemedicine work. And frankly, the horse is out of the barn, in my opinion, telemedicine is where we’re going, and it’s not going to come back. Patients like it, physicians are getting used to it, Stephanie, it’s something that we are reluctantly in some ways adopting, but it’s just how it is, and I think it’s going to be a major important thing for many, many CLL patients as routine management. 

How Will Telemedicine Impact Time-Limited Therapy in CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL? from Patient Empowerment Network on Vimeo.

With chronic lymphocytic leukemia time-limited therapy, treatment is delivered for a pre-determined period of time and then is stopped after remission is achieved. Learn how telemedicine impacts patients on this type of treatment. 

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What CLL Population Will Benefit Most From Telemedicine?

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Transcript:

Stephanie: 

Dr. Pagel, we’d love to ask about the time-limited therapy in CLL specifically, and how telemedicine might play a role in that?

 

Dr. John Pagel: 

Well, this is one of the things that we’re still learning about, Stephanie, and I think it’s going to evolve and change a bit over time, but we know that we need to do. Continually better for patients, of course, we need to meet unmet needs in CLL. And there are lots of unmet needs still in CLL, of course, one of them is curing the disease, and we’re not focusing on therapeutics today in our discussion about working towards that goal, but that does remain a major goal, and we’re working towards that. But really, of course, there are situations with unmet needs where people have been getting therapy continuously now for long, indefinite periods of time, and they may not need all that therapy. And so one of the things is that we’re learning about is what you mentioned time-limited therapy. So the idea of delivering therapy for some defined period of time, getting to a very good remission and then stopping therapy. And where telemedicine comes into play there, is that if they’re off of therapy and doing well, we don’t need to necessarily drag those patients back to the clinic and put them through, not only all of that exposure and that risk, but of course the anxiety that goes with it and everything else.

So again, I think that in those cases where we’re monitoring patients with telemedicine, it’s beautiful for time-limited therapy, and it also allows for us to stay even in closer contact with our patients who again, might have some difficulty getting into the clinic. 

What CLL Population Will Benefit Most From Telemedicine?

What CLL Population Will Benefit Most From Telemedicine? from Patient Empowerment Network on Vimeo.

Among chronic lymphocytic leukemia patients (CLL), there are some that will benefit more from telemedicine visits that have become common practice during the coronavirus crisis. Watch as respected CLL expert Dr. John Pagel explains.

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How Will Telemedicine Impact Time-Limited Therapy in CLL?

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What Subset of CLL Patients Should Utilize Telemedicine?

 

Transcript:

Stephanie: 
Now the pandemic has, of course, presented both challenges and opportunities for clinicians who are trying to manage diverse health conditions, and of course, we’re not just talking about COVID-19. So on the positive side, Dr. Pagel, what are the opportunities you see for CLL patients using telemedicine?

Dr. John Pagel: 
Well, you’re right, Stephanie, it isn’t just about COVID, but COVID has certainly changed the landscape of how we approach many patients in 2020 and now in the future moving forward and particularly with regards to telemedicine. And that’s particularly relevant to CLL patients in particular. CLL, remember is a chronic disease, it’s of course, part of the name chronic lymphocytic leukemia, and people will live with this disease for many, many years, perhaps even decades, and often not even be getting therapy but still have, of course, the disease.

And they need to be monitored, and they are commonly monitored with what we call active surveillance. And active surveillance is typically, as the audience well knows, periodic evaluations with physical examinations and perhaps even some laboratory blood work that’s done on an associated visit. And because of the need for those things over the last many years of how we follow people, with active surveillance, people. We have seen frequently in the clinic, and perhaps in some ways they’ve been seen when they perhaps could be evaluated and taken care of in a different way, and that’s where telemedicine comes in for select appropriate CLL patients. Where maybe we don’t need to bring them in to see their provider, they can get labs done perhaps locally at their primary care physician’s office, if the labs need to be done. And often the physical exam can be even done by video or — so by showing the provider what might be going on, and lots of times that physical exam may not even be important.

What do I mean by that? We’ll remember, there are lots of times where even if you have a lymph node or two around, we’re not going to actually institute or change treatment. So there’s a very unique important population of people with CLL who could obviously benefit from telemedicine moving forward.