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HCP Roundtable: Strengthening the Patient-Provider Partnership in Myeloma Care

 Multiple myeloma experts Dr. Sikander Ailawadhi and Dr. Craig Cole explore how to strengthen the provider-patient partnership through actionable communication tools, workflows, and team-based approaches. Drawing from deep clinical experience, they highlight best practices for supporting informed, collaborative decisions, especially around innovative therapies like CAR-T and bispecifics.

See More from EPEP Myeloma

Related Resources:

How Can Myeloma HCPs Initiate Clinical Trial Conversations?

How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

Do Myeloma Treatment Advancements Create Care Challenges?

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients, EPEP program. I’m Dr. Nicole Rochester. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and overcoming practice barriers. In this myeloma healthcare roundtable, we are tackling the patient-provider partnership in multiple myeloma treatment decision-making.

Some of the topics we’ll explore today include: aligning treatment goals and quality of life preferences among myeloma patients, care partners, and their providers, sharing healthcare provider-to-provider best practices and real world strategies to reduce treatment burden and optimize outcomes, recognizing and addressing differences in treatment priorities between patients, care partners, and clinicians and applying these insights to clinical practice.

It is a privilege to be joined by Dr. Sikander Ailawadhi, Professor of Medicine in the Division of Hematology Oncology at the Mayo Clinic, Florida. Dr. Ailawadhi’s career focus includes the treatment of plasma cell disorders, multiple myeloma, Waldenstrom’s macroglobulinemia, and chronic lymphocytic leukemia. His research focuses on understanding the epidemiology and pathophysiology of these disorders, evaluating the benefit of various therapeutic strategies in different populations. Thank you for joining us today, Dr. Ailawadhi.

Dr. Sikander Ailawadhi:

Thanks for having me.

Dr. Nicole Rochester:

We’re also joined by Dr. Craig Cole, a board-certified hematologist. We are also joined by Dr. Craig Cole, a board-certified hematologist. Dr. Cole leads multiple clinical trials in multiple myeloma and has worked extensively with patient advocacy groups to empower, educate, and bring equitable care to everyone. Thank you so much for joining us today, Dr. Cole.

Dr. Craig Cole:

Thank you for having me. Thank you.

Dr. Nicole Rochester:

We have a lot to discuss as it relates to the patient-provider partnership and myeloma treatment decision-making. So let’s start with aligning treatment goals and quality of life preferences among myeloma patients, care partners, and providers. So I’m going to ask this question of each of you, but I’ll start with you, Dr. Ailawadhi. In the context of an increasingly complex myeloma treatment landscape, how do you approach shared decision-making with your patients?

Dr. Sikander Ailawadhi:

Dr. Rochester, you’re asking such an important question and thanks a lot for starting there. As you rightly point out, the treatment landscape of myeloma is becoming increasingly complex. In fact, if you ask 10, quote unquote, experts on myeloma of how the treatment would be, you’ll probably get 11 to 12 responses around them. So you can imagine that when patients who have just been given this devastating diagnosis along with their caregivers are trying to negotiate that path of decision-making, it can be quite complicated. So the way I approach it in my clinic is, I think before getting to the treatment part, to try to build a bond and a relationship with the patient and their caregivers, make sure that they understand about the disease and the diagnosis very well. 

They need to understand those ins and outs first. What are the markers in myeloma? What is the risk stratification? What is the disease stage? What are the symptoms they are dealing with? Just to make sure that we talk to them on a person-to-person level, trying to bring it down to their level of understanding. And then when we are starting to talk about the treatment options, the way I approach it is I try to lay it down by categories and kind of buckets of treatments with some broad treatment guidelines. Two versus three drugs, three versus four drugs, what are the different categories we are going to choose from and why we are selecting certain options, what is the data to support them?

Once we have come up with some decisions, once we have come up with some plans, I’ll also make sure that they are very aware of the side effects to expect and what to expect with treatment, what to expect in the next one month, in the next six months, over the next five years, et cetera. But then I’ll try my best to write that down in as much detail and simple language as possible in their notes. And I highly encourage patients to record the meeting or have a loved one, a caregiver on the phone if they were not present in person. And if they try making the notes, I’ll tell them, let me make the notes, let me write down on paper, and I’ll share this with you. And then you read my note, but I want your full attention as we are talking.

Then typically after the patient has left and gone home, once we have decided on a treatment, there will be an education visit, during which the nurse will contact the patient, again answer questions, and hopefully within these two or three touch points, we’ve been able to answer questions. It is very difficult, I completely understand, and we don’t have enough time. But that’s also the challenge and that’s also the opportunity for us. And I don’t know what…maybe Dr. Cole can also help guide this even further.

Dr. Nicole Rochester:

Yeah, thank you, Dr. Ailawadhi. Those are great practices. And Dr. Cole, we’d love to hear from you about how you approach shared decision-making. And maybe if you have an example where the patient’s input meaningfully shifted your initial treatment plan.

Dr. Craig Cole:

Yeah, just like Sikander had mentioned, myeloma is complex. For patients, it takes a lot of medical literacy to be able to navigate this disease. If you have melanoma you can go, I always worry about the…I always imagine, what’s my patient going to say when she goes to church? She has melanoma, she can just show them here’s my melanoma. If you have myeloma, then you have to be able to tell another person that you have a cancer of the immune system of a certain cell called a plasma cell that’s inside the bone marrow that I’m checking blood counts.

And it takes a lot in order to get through that. And shared decision-making for myeloma isn’t something that one day that I just walk into a room and say, we’re going to do share decision-making today. It’s a complete journey. And that journey starts with the first visit. So I do exactly what Dr. Ailawadhi said that I actually have the patient information about myeloma. We start with what the disease is. And I actually write down a lot of the information.

Instead of giving them a brochure and saying here you go, read this when you go home. I go over that brochure with the patient. And so we sit, I have my pens, they have their pens. I make sure that when it’s a new visit, when it’s the first couple of visits, that our scheduling people are sure to say, bring your family with you, don’t come alone. Bring somebody with you that can help with all the things that we’re going to talk about during their visit. And sort of too, so I go over every all the details. And I tell them my mom was an elementary school principal.

And I know that it takes three passes, three exposures in order for you to really learn something. So I tell the patients, there’s no pressure. There’s no test at the end, that we’re going to go over this again and again. And the goal set is that eventually you’ll understand this disease as well as I do. And that we’ll be able to talk colleague to colleague, that we’re not going to have this imbalance between the patient and the doctor, but we work together.

And the way to do that is really education. And that education doesn’t take place on one visit. It takes place on every visit, every time. So I had a patient just recently, and she’s 90 years old with myeloma. I put her on Dr. Ailawadhi’s clinical trial. So there you go. And how we got to that is that she came in with…she came from a nursing home. We talked to the nursing home and said a daughter has to come with her, really has to not just…they’re going to send the person with the nursing home. Daughter has to come with her. We sat down and had went through myeloma 101, kind of wrote down everything for her. And I asked her one thing is tell me something about yourself that’s outside of myeloma. Tell me something that hasn’t anything to do with this disease. So I found out she was a nurse, and she was a cardiovascular nurse for years. And so now we talk about that, her history. And I asked her when, on her second visit, about goal setting, and she said that we talked about options.

She said she wanted to not have pain, and she wanted to have more energy. And I said, well, here are the therapies that can get you there. And she was really interested in the clinical trial. She said, “I want to help other people behind me that will have this disease in the future.” That was very motivating for her. When I asked her about the goals of care, that was a very strong motivator for her. And so she decided to go on the clinical trial. I would have offered it anyway, but her motivation was definitely to go on the clinical trial. There have been a few bumps in the road, but she’s very happy with her care right now.

Dr. Nicole Rochester:

That is incredible. I love that both of you really talked about the humanity aspect of your encounters with your patients and the importance that they understand and getting to know them beyond their disease and making sure that they have the proper support during these visits. I really appreciate that. Well, we know that patients come to the table with lots of experiences and expectations, and all of those things can influence their preferences. So, Dr. Ailawadhi, how do you navigate situations where the patient’s goals may not align with the evidence-based recommendations for their disease?

Dr. Sikander Ailawadhi:

An excellent question. I’m so glad that we are having these discussions because we think about these things and we encounter these things, but we don’t end up talking about these situations all the time. So it can be a little challenging because I’ll be very frank. All of us have preferences of what we think is in a way…might be beneficial for the patient. And frankly, doctors, medical professionals, may have this kind of paternalistic view towards medicine. That happens very often.

Similarly, sometimes patients have that similar view that they just want their doctors to take the decision. But at the same time, in this kind of focus on shared decision-making, it is extremely important to understand where the patient is coming from, what are their beliefs, and why are those beliefs there. And frankly, if at some point, see, it’s important to remember our job is to guide the patient, do the best for the patient within our knowledge, our experience, et cetera. But what I say all the time to the patients is, well, we’re presenting these options to you. You’re more than welcome to pick what you want. Let’s discuss. If I don’t feel that may be the best option for you, I’ll put across my case.

But that said, if you take a decision which complies with your beliefs, your knowledge, your understanding, and you’ve decided to go there, we will still fully support you. We will try our best to walk you through that decision in the most appropriate manner. And I’ll give you an example. One of the very important treatments for myeloma today is CAR T-cell therapy. And I’ve recently had, maybe in the past month or so, had a patient who lives maybe an hour, hour-and-a-half away from us, but has good family support, and unfortunately has had disease that is progressing through treatment options relatively rapidly.

So we had a discussion, virtual visit, and I laid out some treatment options, but I strongly suggested CAR T-cell therapy because there’s a possibility that person may get a meaningful response with treatment. And the patient’s first response was, “Nope, not going to do that.” I said, “All right, let’s try to talk about it.” “Nope, not going to do that.” It took maybe a visit or two to get to the point that they were beginning to open up. And they opened up that the side effect profile was just extremely scary for them.

They had read about it. It was extremely scary. It took a third visit, till the third visit for me to try to convey to them enough that, well, all you’re reading is not necessarily all that will happen. Things may happen, but this is the range within which we expect. And our treatment, our management of side effects is much better now, et cetera, et cetera. So I made my case quite vehemently, quite enthusiastically. But despite that, the patient actually sent a message to the nurse because they were not very comfortable saying it again to my face that they really didn’t want to do that. So they sent a message to the nurse that, “Hey, we’re not going to do CAR T.” And they canceled an appointment. So I actually then called the patient and I said, “Well, if you don’t mind, may I speak with you for a few minutes?” They said, “Yeah, sure.” I said, “First of all, if by any reason you’re canceling the appointment was because you thought that you were not going according to my recommendation and that would hurt  me or hurt my ego or make me angry, please, that’s not the case. You don’t want to do CAR T.”

“We will not bring up CAR T, at least in the near foreseeable future. I’m not guaranteeing I won’t bring it up, but I may bring it up in the future, but we can still take care of you. We can do a lot for you. Please, if you’re okay about keeping the appointment and discussing alternative options, let’s discuss alternatives to CAR T. We have many, many things we can do for you.” That made a difference in which the patient then set up the follow-up appointment with his spouse because he wanted her to be there. And we discussed options, and now they’re going to start some other treatment.

In fact, I made a plan that they are going to be getting with their local doctor, so they don’t have to come an hour-and-a-half back and forth. But frankly, bottom line is that the patient’s choices, preferences, beliefs, goals, as Dr. Cole also mentioned, are paramount. And it’s important to be able to convey this to the patient. Our job is to guide. Our job is not to dictate. Sometimes we will come across these situations that the patients are taking a decision which may not be the best based on evidence. But if we really try to think about why the patient is taking that decision, I think that may be the best decision for that individual.

Dr. Nicole Rochester:

That’s such a great example, Dr. Ailawadhi. Thank you for sharing that and even for being vulnerable and sharing with us how things kind of didn’t quite go as well and then you were able to get the patient back on track. Well, speaking of CAR-T therapy, Dr. Cole, I’m going to address this question with you. Do you have any similar stories or have you identified communication strategies that have been effective in improving patient comprehension and engagement around some of these newer treatments like CAR T?

Dr. Craig Cole:

Yeah, you know that myeloma isn’t curable yet, right? So everyone at some point is going to have a relapse. And so right when I say to a patient, you’ll know this stuff as well as I do, once they kind of got settled into their induction therapy, once they got settled in, the one thing that we do is that we talk to the patients about the new therapies. Because after they kind of get settled in, now they’re kind of curious about what else is out there. So even when a patient is on maintenance therapy, there are people on maintenance therapy for years, and their visits can be pretty straightforward. And I use the opportunity during those sort of quiet time visits to talk about new therapies. Now my patients come out, walk in the door, and they say, what’s new in myeloma? And I mentioned the CAR T, and I mentioned under very, very easygoing circumstances I could, I could walk in and say, how do you do? How’s your maintenance?

I could walk out. But I sit down and I talk about these new therapies. So I talk about these are the new bispecifics, or really, you don’t need it now, but this is how they work, there are side effects. Then they come another visit, a couple months later, we talk about bispecifics, talk about how they work, encourage them to go to some of the meetings. I know the patient support meetings, they talk about this, they hear it from other patients. And I kind of lay the groundwork because I can’t go home and talk about the new myeloma therapies with my wife, because she’s heard it for 20 years. She doesn’t want to hear any more about myeloma, bless her heart. And so I talk about it with my patients. So then when the day comes that they actually have relapse and we’re talking about bispecifics, clinical trials, or CAR T, it’s nothing that’s foreign. They’ve heard this over the course of years. And so patient empowerment isn’t, like I mentioned earlier, patient empowerment isn’t you walk in one day and say, hey, it’s time to be empowered.

It’s a journey. It is a practice style that you, just like you practice piano and practice guitar, you practice patient empowerment every visit every day. And you, and I do, I think about that when I go and see a patient, have I engaged this patient so that they understand? Because if they don’t understand what I’m talking about, it’s not on them. That responsibility is solely on my shoulders. So if they say, I don’t understand what an M protein is, then I have failed at doing my job. I need to up my game a bit to make sure they understand that. And so it is really, it’s a journey over time to empower patients and to know about their options, even when we’re not engaging them on that visit.

Dr. Nicole Rochester:

Well, each of you have described just some really amazing ways that you interact with your patients and the personalized care and the conversations and the writing of the notes. And the thing that I’m struck by is that we all know there is very limited time that most physicians have to spend with their patients. So I’m curious, how are you doing this with the limited time? Are there certain strategies that you’ve implemented from a system level? Are there things that you would like to see adopted? And I’ll have you share one, Dr. Ailawadhi, and then I’ll go to you, Dr. Cole.

Dr. Sikander Ailawadhi:

So, you’re so right. In this time-constrained world where we have double-, triple-booked meetings on top of clinic and then grand rounds or tumor boards and this and that, it becomes very difficult. So, I think the first thing is that as an individual or even I would say for my institution, the guidance that we follow is, when I’m in front of a patient, I have to leave everything else at the door when I enter that room. So, in that particular visit, nothing else matters. It is only that patient and everything related to them.

That said, I shared an example earlier where to get to one treatment decision, it took almost four visits. And that’s the reality of the world. So, at least in our system, how we have it set up is that this barrage of messages and in-basket and information, et cetera, that comes, it is screened at a few tiers. So, messages that are related to medications, et cetera, there are clinical assistants who are constantly dealing with that and taking care of that. Clinical questions are typically being handled by our nurse or the pod nurses for the pod.

There are two of them who handle all the questions that come and are clinical and can be handled. At the next tier is that if they have any need for a clinical decision, they will first go to the APPs in the team, the advanced practice providers, which actually I should say one of the things we have implemented is the whole team sits together. So, there is about a five-step radius between me, my nurse, the nurse practitioner, the physician assistant, the scheduler, the research coordinator, everybody sits together for the clinic.

So, that helps that communication. And if they are not able to get the answer with the APP or if it’s a very specific question which I must answer, it’s a treatment-related guidance or a change in management or an urgent message, then I will be involved in that. So, I think we have this tiered work or a process which tends to work good. There are some tools that are being implemented. I personally don’t use that, but there are AI tools for documentation, for example. When we are with the patient, the notes are almost finalized before even we leave the room. So, those AI tools really help with taking away some of that documentation burden. So, I’ll stop with these two examples, but over to you, Craig.

Dr. Craig Cole:

I need one of those. So, one thing, I loved everything that you said, and we kind of do some of the same things that it’s kind of tiered, that I’m not, when a patient is ruined, I’m not the first person that they’ve seen that day. And some of the questions have already been…they may have or concerns or problems have already been screened by one of our, by like our pod nurses too. So, when I walk in, if they’re having a problem with their central line, that’s being taken care of in the background while I’m with the patient. And so, I think for some of the complex patients that we…some of the patients on maintenance there, but I don’t ask the nurse to really go in and see them. But some of the more complex patients, the pod nurse will go in and kind of screen through to make sure that everything’s okay so I can be prepared, which then streamlines things. The other thing is I make sure that I tell patients to write down your questions.

Come in and write and have your questions set because it will streamline, instead of patients kind of hemming and hawing and saying, gosh, what was I going to ask you? I think the biggest thing which has really helped is I congratulate patients when they bring in their notes. I say, those are fantastic questions. I’m so glad that you wrote them down, which then encourages them to do it again.

And then it really, I have one patient, bless her heart, and she always has, I think she works really hard at making 20 questions because some of the questions like 17, 18, 19 are just, they’re definitely filler questions, but her magic number is 20. So we just hit, hit, hit, hit, hit, hit, hit. And usually, and I say, make sure you incorporate questions about how you’re feeling and what you’re doing now and how you’re doing now and as part of our visit. And it streamlines things quite a bit. And sometimes I ask to make a copy of their questions. So when I make my note, I have at least a template of some of the stuff that we talked about.

But having an organized visit as much as you can with a patient, of course, are going to be things that kind of get you by surprise. The other thing is just like Sikander said, I am a time, very, very time, timed person. And I’m always thinking, gosh I’m running late, but I’m with the patient. I encourage my patients. And I do, when I do talks for patients, I say, slow down your doctor. If your doctor’s running too fast, slow them down. I even tell my patients that if I’m going too fast, slow me down. So all my patients know that I run a little late, sometimes a lot late, but they know the reason I’m running late is I had to spend time with somebody. And they’re very understanding for my tardiness.

Dr. Nicole Rochester:

That is wonderful. Thank you to both of you for such a rich conversation about engaging patients and their partners. So now we’re going to shift to talk to our healthcare provider audience about best practices and real world strategies to reduce treatment burden and optimize outcomes. And I’m going to start with you, Dr. Ailawadhi. As the therapeutic arsenal for myeloma continues to grow, how are you and your team proactively addressing treatment burden, whether related to toxicity, visit frequency, or logistical demands so that your patients are adherent to therapy and also having quality of life?

Dr. Sikander Ailawadhi:

So extremely important question that you raise. Treatments are clearly becoming very complex. The needs on the patients, the needs on the caregivers, the needs from the practice, from us, from our staff, they are just increasing tremendously. Literally, our nurses had to be trained how to handle CRS-related calls, how to handle neurotox-related calls with all these new drugs, et cetera. So it’s required a lot of that training of our staff, our side first, to be able to handle all the anticipated and unanticipated asks from the patients.

That said, I think the goal, and I think this is something that as a myeloma community, all of us have to spend time on is try to, like you rightly pointed out, decrease the treatment burden. I would say decrease the burden on our patients collectively. We have several drugs that have been now approved where we’re still learning how to use them. None of us in the medical community feel that those drugs are optimally dosed or their frequency is optimal, et cetera. So I think in the day-to-day work, what we’re doing is providing tons of education and awareness opportunities for patients and caregivers to try to arm them with as much information as possible prior to starting a treatment, so preparing them.

We have an effort going on which is a little bit tricky and difficult, but almost giving an informed consent-type information to patients and caregivers when they’re even starting standard of care treatment because just preparing them. We don’t do that for standard of care. We give tons of information for trials. We just don’t give that much information for standard of care. We have certain videos that have been prepared, and we share those. We host those on YouTube, for example, and we share those with patients and give them links saying, hey, watch this, see this. It’ll help you understand, et cetera.

We’re also planning some, so I think we’re trying to harmonize our own practice where we’re trying to say, okay, at such and such intervals as a group, we have decided we will do XYZ testing. Based on that, we will discuss with the patients the current data, and if need be, we will space out their treatment so their visit frequency decreases, et cetera. And then at our institution, we also have, at Mayo Clinic, we also have this opportunity for what’s called remote patient monitoring, so all our patients who start on treatments like bispecifics and sometimes even CAR-T patients are kind of connected with our remote patient monitoring infrastructure where they don’t even have to come in that frequently, and, of course, they don’t have to stay in the hospital.

We treat all our bispecifics as outpatient, but by doing those things, we’re trying to reduce their burden for having to deal with the treatment and its impact. We want the patients to feel better. We want them to have improved quality of life, and frankly, we want them to stay home when they don’t really need to be out of the home. We’re trying to gear an infrastructure, we’re really far from being perfect. I think in a myeloma community, all of us are far from being at that optimal state, but slowly, gradually, we’re making progress towards it.

Dr. Nicole Rochester:

Thank you so much, Dr. Ailawadhi. Dr. Cole, kind of staying on this same topic, when we think about patients who are receiving multiple lines of therapy or maybe those who are experiencing functional decline, how do you adjust your strategies over time to engage with those patients?

Dr. Craig Cole:

Yeah, it is, as patients kind of go through their journey and as they go through treatment lines, I am sure not to assume that the treatment goals that we had 10 years ago are the same treatment goals that we have today. And so it is, we have these periodic, when I’m meeting with my patient, meeting with their family we reassess what are the goals of treatment? I had a patient with high-risk disease that had come in to see me a few years ago and their goal was, “I want to be MRD-negative.” And I was like, okay, we have studies, we have therapies that can try to achieve that goal. And then later on, years later, after a couple of relapses, we talked about what was the goal? And their goals had shifted. Their next therapy after they had failed a CAR T could have been more aggressive this, more aggressive that. And I said, “So with everything that’s been happening is, what’s your current goal? What do you want out of the next decision that we make?”

And they said, “Really, I just want to have enough energy to go to my granddaughter’s graduation.” And it wasn’t so much being MRD-negative, but it was very different. And so we de-emphasized a lot of the lab tests the M proteins and started really working on that aspect, which included involving a lot of palliative care during their treatment journey. And I think one important point is that involving the team shouldn’t be a surprise. When the team walks in the room with me, it shouldn’t be, “Oh, my goodness, I must be dying.” It’s that, “Yes, I met the social worker. Yes, I’ve met the palliative care doctor years ago, months ago. Yeah, I know these people.”

And when the goals have changed, enacting the multidisciplinary team isn’t such a surprise. And it makes that a much more comfortable transition and is not a surprise. A lot of patients say when they see palliative care, they’d never met them before. They’re that can be really frightening to meet a new person like that. In that situation, where they’ve met them before, they have rapport already, then it’s not such a bad transition. And then all of us we circle the wagons around what that goal is. And I tell my patients, that may change in a few months, it may in a few years, your goal, but make sure you verbalize that to me and make sure that I always ask that.

Dr. Nicole Rochester:

Thank you so much, Dr. Cole. Well, as we prepare to wrap up, we’re going to talk a little bit about treatment priorities and how they may differ between patients, their care partners, and their clinicians. So, Dr. Ailawadhi, in your experience, what are the most common differences in treatment priorities that you’ve encountered? Maybe you can share one example and how you successfully navigated those challenges in those situations.

Dr. Sikander Ailawadhi:

Sure, absolutely. So there’s actually, I think in myeloma, we’re lucky to have some of this question even supported by research. So there have been a couple of studies now done, one through the IMF even, where they looked at the doctors’ priorities and the patients’ priorities. And there is also some similar work that Dr. Cole and I actually have been able to collaborate on together and present at ASH a few years ago. And it seems that the doctor’s priorities are always very different from the patient’s. The doctors are always focused on this primary objective, secondary objective, PFS, OS, response rate, MRD negativity.

And majority of the times, while the patients do want to live longer, please don’t misunderstand me, but the focus on quality of life, the focus on symptom control, the focus on burden on the patient and their caregiver and the family, et cetera, is paramount and weighing them down all the time. So I think trying to understand, which I think Dr. Cole mentioned very nicely, is trying to understand that patient’s goals. What are they looking for in the treatment? And trying to meet them at that level becomes extremely important.

And if I was to give another example of specifically where things changed, I think Dr. Cole mentioned, for example, a graduation for a patient’s family member or child. I’ve had similar experiences where we came in with treatment options. So I’ll share with you, there is one patient, very dear patient, where it’s been a constant struggle to figure out the treatment options for that person because, to me, she may look like a myeloma patient, but when I try to dig deeper over these past maybe six or seven or eight years, I’ve known her, she is a grandmother who has custody of her grandkids and is taking care of them. She has her own daughter who’s going through some medical and family issues of her own so cannot take care of the grandkids or her kids.

So this patient of mine has custody of all her grandchildren. She lives about 30 to 40 minutes away from where we are. So the distance is a constraint. I’ve tried my best connecting her with their local community hematologist, but somehow that didn’t work out for her. So she insists on coming here. So on the face of it, while our team talks about, oh, it’s so difficult to get her to come or oh, so difficult to check labs. It’s so difficult to do this or that. I’ve been discussing CAR T with that patient for the past almost a year.

We have never been able to do that for the simple reason logistics don’t line up. So finally, we said, okay, why do we even keep talking about CAR T? This is the ideal patient who’s going to go to the bispecific antibody as long as we can get her to do that.  And so we’re tailoring the treatment plan to that patient’s goals because while she wants to live longer, she wants to take care of her grandkids. She wants to be able to stay at home as much as possible, provide some medical care to her own daughter while getting herself treated. So I think understanding these goals and trying to tailor the patient’s treatment with all our knowledge and all our biases and all our preconceived notions and this and that, the bottom line is that the needs of that patient must come first. And whatever the literature, the this, the that, the articles, the trials, that has to all conform to that one patient’s need at that moment.

Dr. Nicole Rochester:

Absolutely. Thank you so much. This has been an amazing conversation. Unfortunately, it is time to wrap up. And I want to give you all the opportunity to share closing thoughts. You’ve shared so many important tips today. So many things that the audience will be able to take away from this conversation. But if you were to summarize it all into one closing thought, I’ll start with you, Dr. Cole. What’s the most important takeaway message that you want to leave other health care professionals who are watching?

Dr. Craig Cole:

No, and thanks for the opportunity. This is a passion of mine. And what I hopefully get across to our fellows and our residents is no matter what the discipline, no matter what the field of oncology, these are really, really important things to incorporate in your practice. And I think the one thing is that patient empowerment and patient education is not a one-time event. It is a style of practice. It’s something that you do every visit, every day, every day that you see a patient.

And the question I always ask myself is, have I empowered this patient? Are they engaged to this disease? And I never blame the patient.  I always take a look inward if I’m not achieving those goals. So my takeaway is, know your patient. Know who your patient really is. Just like Sikander said, she may be a myeloma patient, but she’s someone’s grandmother and primary caregiver. Knowing those details goes a long way, goes a long way in patient care and patient empowerment. That levels the playing field between you and your patient so that your partners in the journey, and it doesn’t have a paternalistic dynamic.

Dr. Nicole Rochester:

Thank you so much, Dr. Cole. What about you, Dr. Ailawadhi? What’s your closing take-home message for the audience?

Dr. Sikander Ailawadhi:

So, Dr. Rochester, again, thanks for this opportunity. I think this has been a great discussion. So I think my thought, quite similar to what Craig mentioned, I think, as you’ve pointed out a couple of times in these questions, that the treatment and management of myeloma is becoming very complex. And when we try to say on top of that, we have to reduce disparity, we have to improve shared decision-making, we have to give the patient time, we have to empower the patient, we have to educate them, the patient should know what questions to ask.

There is so much of this competing thoughts with constraint on time, staff, et cetera. My thought or my suggestion to our colleagues who are listening out there or spending time, and I thank them for spending their time listening to this program, is that it’s probably a good idea to take a step back, think of all the barriers in the ways of that patient, in the ways of a physician, in the ways of that practice, try to list all those barriers and start somewhere, start making some changes in your workflow, in your practice, and how you see the patient, how you talk to the patient.

We are, I would say, blessed, that one, the field is improving, but we also have several better tools, AI tools, communication tools, et cetera. So once you have an inventory of the barriers, start chipping away at them. And slowly, gradually, you will start seeing incremental improvements in how we are empowering the patient, but also empowering the practice, empowering the physicians, the healthcare providers. I think it’s important to help them start somewhere and hopefully incremental changes will make that bigger, meaningful difference.

Dr. Nicole Rochester:

Well, thank you both for just everything that you shared today. I feel like if I were to summarize this conversation, you all really talked about the art of medicine. There’s the science of medicine, and there’s the art of medicine. And so you all have really just articulated the art of medicine and the importance of connecting with patients and meeting them where they are and getting to know them as people outside of their disease. So thank you again for this riveting conversation. And thank you to those of you who are tuning in to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester. Have an amazing day.


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The Pap Smear That Changed Everything | Lori’s Cervical Cancer Story

Lori, a 40-year-old mother, shares how a routine Pap smear led to a cervical cancer diagnosis and a powerful journey of resilience and advocacy. From missed symptoms to becoming ACTIVATED in her care, Lori’s story is a call to action for early detection and equity in cancer care.

See More From [ACT]IVATED Cervical Cancer

Download Resource Guide Download Spanish Resource Guide

Related Programs:

Exploring Antibody Drug Conjugates in Cervical Cancer Treatment

Exploring Antibody Drug Conjugates in Cervical Cancer Treatment

Cervical Cancer Disparities | Key Factors for Black and Latinx Patients

Cervical Cancer Disparities | Key Factors for Black and Latinx Patients

Understanding Antibody Drug Conjugates (ADCs) in Cervical Cancer

Understanding Antibody Drug Conjugates (ADCs) in Cervical Cancer


Transcript:

Looking back, I never imagined how something as routine as a Pap smear would change everything.

I’m Lori. I’m 40 years old and biracial, and I fall into not one, but two groups that face disparities when it comes to cervical cancer outcomes. I’m sharing my story in case it helps someone else who might be putting off a screening or brushing off symptoms that don’t seem like a big deal.

My symptoms started with some abdominal bloating and bleeding between periods. At the time, they didn’t seem that unusual to me, so I just chalked it up to getting older. I hadn’t seen a doctor in a while, my previous one had retired, so I finally made an appointment with someone new and scheduled a checkup along with a Pap smear.

In the weeks leading up to my appointment, I noticed I was feeling more tired than usual, but again, I didn’t think much of it. Then my Pap smear came back abnormal, and my new doctor referred me to a gynecologic oncologist for further testing.

After a biopsy, I was diagnosed with stage IIB cervical cancer. I was stunned. But at the same time, I felt incredibly lucky that I’d made that appointment when I did. I still wonder, what stage would my cancer be at if I’d waited any longer?

My doctor and I discussed treatment options and decided on a combination of chemotherapy, radiation, and brachytherapy. I joined an online support group for patients going through similar experiences, and I was so thankful for my friends from church who helped with meals, rides to treatment, and looking after my 12-year-old daughter. I got through it. My recovery went well and I’m now cancer-free. 

I’ll never stop being grateful for the support I had along the way.

Going through this experience has transformed me. I’m committed to raising awareness about the disparities in cervical cancer. Hispanic and Latina women face higher incidence rates, while Black women have a significantly higher mortality rate compared to white women. Even more troubling, women of color, including Hispanic, Black, and Asian women, are grossly underrepresented in clinical trials. This isn’t just a statistic; it’s a critical issue that must change.

My [ACT]IVATION Tips for patients and families facing a cervical cancer diagnosis is:

  • First, ask your care team questions to learn about the status of your cervical cancer, treatment options, and what to expect during and after treatment.
  • Think about joining a patient support group to offer and receive emotional support.
  • And don’t forget to ask about clinical trials that may be a potential treatment option for your cervical cancer.

If my story helps even one person take that first step, making an appointment, asking a question, or advocating for themselves, then sharing it was worth it.

Cervical Cancer Disparities | Key Factors for Black and Latinx Patients

Dr. Abigail Zamorano of McGovern Medical School at UT Health Houston discusses disparities in cervical cancer treatment among Black and Latinx communities. She highlights key barriers—access to care, transportation, and caregiving—and shares strategies for patients and providers to improve treatment access and continuity of care.

[ACT]IVATION TIP

“Speak up about barriers—patients should seek support and resources, while providers must anticipate challenges and involve caregivers in care planning.”

See More From [ACT]IVATED Cervical Cancer

Download Resource Guide Download Spanish Resource Guide

Related Programs:

Screening Saves Lives: Overcoming Barriers to Cervical Cancer Prevention

Screening Saves Lives: Overcoming Barriers to Cervical Cancer Prevention

Advancing Cervical Cancer Care: Breakthrough Treatments and the Power of Clinical Trials

Advancing Cervical Cancer Care: Breakthrough Treatments and the Power of Clinical Trials

Understanding Antibody Drug Conjugates (ADCs) in Cervical Cancer

Understanding Antibody Drug Conjugates (ADCs) in Cervical Cancer


Transcript:

Lisa Hatfield:

Dr. Zamorano, what disparities have you observed in the treatment of cervical cancer among different demographic groups? And can you provide an overview of key barriers for Black and Latinx communities? And how can patients avoid or address these barriers?

Dr. Abigail Zamorano:

I say that the most significant barriers are also what are causing the disparities. The most significant barriers are typically in a patient’s ability to identify a problem and then to access a provider for a diagnosis and then ultimately access a provider team for treatment.

This is a multi-step process that really relies on patients’ ability to access care whether through a hospital setting, an emergency room or a provider if they have insurance or a clinic that can provide screening or diagnosis without insurance, which can be really challenging to find, and it’s a difficult system to navigate.

When patients are ultimately diagnosed with cervical cancer, the most common treatment is a combination of both chemotherapy and radiation. Unfortunately, this treatment is really time-intensive. It’s every day and must be completed within a certain number of weeks. And so it can be really hard on patients to access this treatment, whether it’s for transportation difficulties, because they live far from their clinic, or sometimes transportation difficulties even if they only live five minutes from the clinic.

It’s also really hard on patients who have, who provide child or elder care, who work, who speak languages other than English, who have other responsibilities. And so I do encourage both provider teams and patients to speak up about any barriers that they might foresee and in order to best address them in order to make the diagnosis and then the treatment as seamless as possible.

My [ACT]IVATION tip for this question is to speak up about barriers and this applies to both providers and to patients. I really encourage patients to think about what their provider is recommending and to think about the different things that they’re going to need in order to meet all of those goals. I encourage patients to lean on their support groups in their family and their caregivers, because they’re probably going to need a little bit of help through this process.

I also encourage providers to think about what their patients might need, think about where their patients live, what resources they have, think about what support groups they have at home and for providers to also pay attention to their caregivers. The caregivers of patients are so important for patients to complete their therapy. And a lot of times we don’t ask the caregivers how they’re doing and what they’re going to need to help their patients. And so including the patient and the caregiver in the discussion is really important.

Lisa Hafield:

Okay, thank you, that’s great. And I do have one follow-up question in talking about barriers, particularly with access. So you have a clinic in Houston that does screenings in the Hispanic community. So if a patient comes in and is screened and the results come back abnormal on the screening, what is the next step for that patient? Will these clinics that could be around the country or throughout, in different states, will they provide continued care, or will they provide referrals for these patients who are already maybe having difficulty with access? What is the next step for those patients who may receive those abnormal results?

Dr. Abigail Zamorano:

An abnormal cervical cancer screen doesn’t always mean a cervical cancer. Most of the time it means a cervical pre-cancer. And that can be very low grade or very mild, which sometimes those go away on their own. Our bodies are really good at managing our own illnesses. And even with early pre-cancers, sometimes our immune systems help manage those. The higher grade pre-cancers that are closer to cancer typically do require a treatment. Our clinic does provide both the diagnosis of pre-cancer and the management. These are procedures that we perform in the clinic. 

They don’t need someone to be in the hospital or in the operating room, necessarily. So we’re able to provide all of these services in our clinic. Most clinics that provide cervical cancer screening, typically just provide the screening and then have other specialty clinics that they would refer out to for the management of abnormal results. Ours is a little unique because we do it all together, and we really aim to be a referral center for all of those clinics that do a great job at screening the population and reaching as many patients as possible. But we want to be the specialty center that then manages the cervical pre-cancer to prevent it from ever becoming cancer. For the patients that are ultimately diagnosed with cancer, we have referral patterns, and we have ways of navigating them to cancer-based therapy.

The Future of Patient Advocacy: 5 Key Trends for 2025 and Beyond

As a patient advocate, your firsthand knowledge of navigating health challenges positions you as a valuable voice in improving patient care. By championing change, advocating for policies and practices that prioritize patient well-being, and ensuring equitable access to quality care, you are uniquely positioned to ensure that patients get the care they need. But as the healthcare landscape evolves, so too does the role of advocacy. New technologies, research models, and policy shifts are reshaping the future. Staying informed about these trends will enable you to keep your efforts forward-thinking, inclusive, and powerful.

Here are five trends that will shape the future of patient advocacy in 2025 and beyond—and how you can lead the way.

1. AI-Powered Healthcare

Artificial intelligence (AI) is transforming healthcare with new possibilities. Beyond symptom checkers and virtual assistants, AI can tailor medical information to individual patient profiles. However, as AI systems process sensitive health data, privacy and consent concerns become even more pressing. To protect their privacy, patients must have control over their data. Algorithmic bias is also a concern. Healthcare disparities will worsen if AI is trained on biased data. For example, an AI trained mainly on data from white patients may be less accurate for patients from other racial or ethnic groups.

Advocacy Role

  • Collaborate with policymakers to strengthen data privacy and security regulations.
  • Educate other patients and the public about their rights and the risks of AI-driven systems.
  • Advocate for AI systems to be trained on diverse datasets to minimize bias and promote equitable care.

2. Patient-Led Research

Traditional research models have often sidelined the patient perspective. Today,  patient-led research is gaining momentum. Patients are no longer passive participants but active researchers, study designers, data collectors, and knowledge sharers. Online platforms and social media make it easier than ever for patients to connect and collaborate on research projects. The “Count Me In” initiative, which helps patients share their health data for cancer research, is a great example. [1]  Patients contribute to a large dataset by pooling their data, speeding up our understanding of cancer and leading to new treatments. Similarly, the Metastatic Breast Cancer Project allows patients to share their tumor samples and clinical data, leading to important discoveries. [2]

These initiatives show how patient communities can drive research and make a real difference. Yet, challenges remain—ensuring the scientific rigor of patient-led research, safeguarding privacy, and addressing potential conflicts of interest require collaboration between patients, researchers, and healthcare providers.

Advocacy Role

  • Forge partnerships with academic institutions and research bodies that actively involve patients in every research phase.
  • Help develop best practices that balance scientific rigor with ethical standards.
  • Promote patient-driven research as a valuable contribution to scientific progress.

3. Digital Health Divide

Digital health tools and telemedicine have the potential to revolutionize healthcare access—especially for individuals in rural areas, those with mobility issues, or those managing chronic conditions. From virtual consultations to wearable devices that track vital health data, technology is putting more control into patients’ hands. However, a digital divide persists. Millions lack reliable internet access or the skills to use these technologies, creating disparities in care.

Advocacy Role

  • Offer workshops that teach patients how to use digital health tools.
  • Champion the development of accessible mobile health apps and wearables.
  • Advocate for policies that expand broadband access, ensuring no patient is left behind.

4. Expanding Influence in Health Policy

Patient voices are no longer just a token presence in policymaking— they’re becoming central to shaping healthcare systems, influencing research funding, and improving treatment access. Governments and healthcare organizations increasingly recognize that patient voices bring invaluable insights to decision-making processes.

Advocacy Role

  • Monitor healthcare policy changes and hold decision-makers accountable.
  • Stay engaged by tracking legislative actions, attending public hearings, and speaking out on issues that matter to patients.
  • Amplify patient voices by participating in advisory boards, councils, and public forums.

5. A Stronger Focus on Health Equity

At the heart of patient advocacy is the idea that everyone deserves equal access to quality healthcare, regardless of their race, ethnicity, gender, sexual orientation, or socioeconomic status. Unfortunately, health inequities persist—particularly for marginalized communities, who often face higher rates of chronic illness and shorter life expectancy due to systemic barriers like discrimination, poverty, and lack of access to care.

Advocacy Role:

  • Make sure marginalized communities are heard.
  • Advocate for equitable resource allocation and culturally competent care.
  • Hold healthcare institutions accountable for addressing disparities and promoting equity.

Looking Ahead: Building a More Inclusive, Patient-Centered Future

The future of patient advocacy is both challenging and full of possibilities. As we move into 2025 and beyond, the goal is clear: to foster a healthcare system where every patient is seen, heard, and empowered to help shape the future of their care.

Stay informed. Stay involved. And, most importantly, stay inspired—because your voice has the power to transform healthcare for the better.

[1] www.joincountmein.org

[2] www.mbcproject.org

What Steps Can Patients Take to Combat Cervical Cancer Disparities?

Cervical cancer disparities persist, but how can patients help improve disparities? Expert Dr. Shannon MacLaughlan from University of Illinois discusses the value of patient advocacy, elevating patient voices, and proactive patient advice for self-care. 

[ACT]IVATION TIP

“…focus on yourself. I take care of women almost exclusively, and they’re the mamas and the sisters and the daughters, and they’re the caregivers, and they are focusing on everyone else. And now it’s time to focus on yourself and get yourself through this and then circle back, and we’ll start taking care of everybody else together.”

See More From [ACT]IVATED Cervical Cancer

Related Programs:

Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

Disparities in Cervical Cancer Treatment: The Role of Poverty and Systemic Barriers

How Does Insurance Status Impact Cervical Cancer Diagnosis?

How Does Insurance Status Impact Cervical Cancer Diagnosis?


Transcript:

Lisa Hatfield:

Dr. MacLaughlan, what are the next steps in addressing the disparities you’ve identified in cervical cancer diagnosis and management, and how can patients be involved in this process?

Shannon MacLaughlan:

The most important thing that a patient can do is take care of themselves and get through your treatment successfully. You are a survivor of that cancer the moment you hear the word cancer. The moment you get that diagnosis, you are a survivor, and you focus on that. Try not to isolate yourself, because this is a team, it’s a team sport. Your medical team should have a team, and you should have a team.

Then, when you are feeling healthy, and when you are energized, I need you to spread the word. The most impactful way a patient can contribute to breaking down barriers is to start from the inside, to share your story, to talk about it. Advocacy can be as simple as going home and talking to your family about the kind of cancer that you have, how it started, what they can do to prevent it, what they can do to prevent it in their kids. Just start there, and then when we get you healthy again, then it’s time to elevate your voice.

I feel strongly that when we see disparities in outcomes related to cancer, it is the fault of the system, and it’s a little too easy and maybe not realistic to tell a patient to advocate for yourself with your doctor, because you might not have a choice in your doctors, and that’s just easier said than done. The system has to take ownership. We have to take ownership, and we have to learn from you.

And so those of us trying to break down these inequities and introduce some justice, particularly in the world of cervical cancer, we aim to elevate the voices of the people with the lived experiences and the communities who are experiencing it, because most often patients come to my office and they say, even though this was a thing, I didn’t even know we had our own ribbon. I hand out ribbons to patients with cervical cancer because they’re survivors. I need them to talk about it.

I need them to talk about it in their communities so that they know it’s a thing, and they hold us accountable. So my action item is, one, focus on yourself. I take care of women almost exclusively, and they’re the mamas and the sisters and the daughters, and they’re the caregivers, and they are focusing on everyone else. And now it’s time to focus on yourself and get yourself through this and then circle back, and we’ll start taking care of everybody else together.


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Expert Perspective | The Value of Empowering Endometrial Cancer Patients and Care Partners

 

How can patients feel empowered after an endometrial cancer diagnosis? Dr. Hinchcliff emphasizes seeing a GYN oncologist, asking questions, and bringing a care partner to appointments for support and understanding key decisions.

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

 

Related Programs:

What Questions Should Patients Ask About Endometrial Cancer Testing?

What Questions Should Patients Ask About Endometrial Cancer Testing?

Questions to Ask About Endometrial Cancer Clinical Trials

Questions to Ask About Endometrial Cancer Clinical Trials

Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine?


Transcript:

Katherine Banwell:  

As a provider, Dr. Hinchcliff, how do you empower care partners and patients who have been diagnosed with endometrial cancer? 

Dr. Emily Hinchcliff:  

So, I think that one of the most important things about a diagnosis of cancer is to develop the relationship with your physician. I think that it is truly a partnership, and it is an incredibly important thing as you think about the next steps in your treatment. For someone who’s diagnosed with endometrial cancer – or, honestly, cancer in general – making sure that you’re seeing a cancer specialist in obstetrics and gynecology – it can actually be sometimes a little bit difficult. 

You might have gotten your diagnosis with a general OB/GYN, but it’s very important to see a GYN oncologist – a cancer-specific doctor – because we’ve actually shown that patients who see GYN oncologists are more likely to get guideline-appropriate care – so, care within what we think of as the right standard – and then they tend to do better with their cancer. So, that’s kind of the first step, is finding that doctor and developing the relationship with them.  

The second thing that I would say is that you should ask questions. Bringing people to your appointments to have an extra set of ears is always helpful. Taking notes and trying to keep track yourself of what was talked about in your appointment, I always encourage my patients to do, but really, asking questions. So, making sure that you know what those molecular tests are that your doctor is sending, making sure you know, once they’re sent, what your results were and how that might change what your treatment will be. 

Now, you don’t need to go and get a degree in biology or go to medical school. I think that that’s a lot to ask someone going through a cancer journey, but it is really important that you understand where those key decision points might be made because that allows you to feel not only like your own advocate, but that you have some ownership of those decisions and you understand why the decisions are being made in the way that they’re being made. 

How to Create a Cancer Survivorship Care Plan

 

What is a cancer survivorship care plan? This animated explainer video provides an overview of the key components of a survivorship care plan, advice for collaborating with your healthcare team when preparing for life beyond cancer, and the overall benefits of planning for survivorship.

 

Related Resources:

Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | Ongoing Healthcare and Follow-Up

Cancer Survivorship | The Positive Impact of Peer Support

Cancer Survivorship | The Positive Impact of Peer Support

What Does Cancer Survivorship Mean?

What Does Cancer Survivorship Mean?


Transcript:

Whether you’ve just finished treatment or are years out from your diagnosis, a Cancer Survivorship Care Plan can help you, your loved ones, and your healthcare team manage your overall health. 

So, what exactly is a Survivorship Care Plan? This plan is your roadmap for the next phase of your cancer journey. It includes information about your diagnosis, prior treatments, follow-up care, and it helps you and your healthcare team monitor your long-term health. 

So, what should your Survivorship Care Plan include? Here are the key components: 

  • It starts with a treatment summary, which lists the types of therapy you received, the dates of treatment, and any complications that arose. This information allows your future healthcare providers to better understand your medical history. 
  • The plan also includes a follow-up care schedule that details regular check-ups, screenings, and tests. These appointments monitor for cancer recurrence and ensure any side effects are managed effectively. 
  • Potential long-term side effects of your treatment are also noted in a survivorship care plan. Having this information can allow you to be more aware, so you can communicate any physical changes with your team.  
  • Tips and guidelines for maintaining a healthy lifestyle are also added to the plan and may include advice on diet, exercise, and mental health support, which can all support your quality of life as a survivor. 
  • Another key component is contact information for your healthcare providers, including your oncologist, primary care physician, and any specialists you see regularly. This makes it easy to reach out when you need assistance or have questions. 

Creating a Survivorship Care Plan is a collaborative effort. Schedule a meeting with your oncologist and primary care physician to develop your plan. Here are some questions to guide your discussion: 

  • What specific follow-up tests do I need? 
  • How often should I see my healthcare team? 
  • What symptoms should I watch for that might indicate a recurrence or new cancer? 
  • What steps can I take to manage any long-term side effects? 
  • Are there specific lifestyle changes I should make to improve my health? 

Once your plan is in place, it’s time to take action. Follow your healthcare team’s recommendations and attend all appointments. So, what other steps can you take to stay proactive in your survivorship? 

  • Regularly update your plan and review it with your doctor or care team. 
  • Set health goals with your healthcare team and plan for potential challenges. 
  • You should also seek counseling to address your emotional and mental health when necessary. Keeping a journal may be helpful too. 
  • And, seek out support and resources from advocacy organizations like the Patient Empowerment Network and Cancer Support Community. 
  • It’s also a good idea to consider financial and legal aspects: Understand insurance, explore financial aid, and prepare legal documents as appropriate. 
  • Maintain a healthy diet, engage in regular physical activity and incorporate enjoyable exercises into your daily routine. 
  • Take good care of yourself – Lean on friends, family, and support groups for emotional and practical support. 

Remember, you are not alone on this journey. By creating and following a Survivorship Care Plan, you’re taking an important step toward living well after cancer. To learn more about cancer survivorship and access support resources, visit powerfulpatients.org.  

PRESS RELEASE: Patient Empowerment Network Joins the National Health Council

A New Chapter in Patient Advocacy

We are thrilled to announce that Patient Empowerment Network (PEN) has become a member of the National Health Council (NHC), a leading organization dedicated to providing a united voice for people with chronic diseases and disabilities.

This partnership marks a significant milestone in our mission to empower patients and amplify their voices in healthcare. By joining the NHC, we are aligning ourselves with a diverse community of over 160 national health-related organizations and businesses, all working towards improving health outcomes for millions of Americans.

Randy Rutta, Chief Executive Officer of the National Health Council, welcomed our organization, stating: “The National Health Council welcomes the Patient Empowerment Network (PEN) into our diverse community of members. PEN personifies the NHC motto of Putting Patients First™ and will bring a valuable perspective from the cancer community.”

Tracy Rode, Chief Executive Officer of Patient Empowerment Network, expressed enthusiasm about the new partnership: “Joining the National Health Council is a significant step forward in our mission to empower patients, their care partners, and healthcare providers. We are excited to work alongside other leading organizations to drive meaningful change in healthcare and improve patient outcomes across the country.”

This collaboration will enable us to:

  • Expand our reach and impact in patient advocacy
  • Contribute to shaping patient-centered health policies
  • Share best practices and innovative approaches in patient empowerment
  • Collaborate on initiatives that promote access to quality, affordable healthcare

As we embark on this new chapter, we remain committed to our core values of integrity, collaboration, and patient-centricity. We look forward to working alongside the NHC and its members to drive positive change in healthcare and improve the lives of those living with chronic diseases and disabilities.

Stay tuned for updates on our collaborative efforts and the exciting initiatives that will stem from this partnership. Together, we can create a healthcare system that truly puts patients first.

Read Full Press Release

Harnessing Community Resources to Support Rural Myelofibrosis Patients

How can community resources be utilized to support rural myelofibrosis patients? Expert Dr. Michael Grunwald from Levine Cancer Institute shares his perspective and how conversations with providers can be enriched.

[ACT]IVATION TIP

“…while one cannot trust everything one learns online, oftentimes online communities can point patients toward helpful questions that enrich the conversations they have with their providers.”

Download GuideDescargar Guía

See More From [ACT]IVATED Myelofibrosis

Related Resources:

Managing Myelofibrosis for Patients Living Far From Specialists

Managing Myelofibrosis for Patients Living Far From Specialists

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Leveraging Telemedicine to Manage Myelofibrosis in Rural Areas | Overcoming Distance and Accessibility Challenges

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Engaging in Myelofibrosis Shared Decision-Making | How Patients Can Collaborate With Healthcare Providers in Treatment

Transcript:

Lisa Hatfield:

Dr. Grunwald, what role can community resources play in supporting rural myelofibrosis patients, and how can they be effectively utilized?

Dr. Michael Grunwald:

Thanks for that question, Lisa. I’ve found that the MPN community is very strong. Patients meet in-person at patient advocacy events sometimes. There are powerful online forums for patients to communicate and teach one another and learn from one another.

Frequently, patients have helpful advice for other patients, and it can be helpful to share experiences. While patients can’t always trust everything that they hear from word of mouth or online, I find that a lot of times patients bring to me very interesting questions about their disease and observations about their disease that are informed by connecting with other patients.

And I think that those connections are available to most patients nowadays. Most of our patients, regardless of where they live and regardless of their access to healthcare, most of them have some sort of device, whether it’s a smartphone or a tablet or a computer where they can interact with others if they are not able to find an in-person forum to meet other patients.

My [ACT]IVATION tip for this question is that while one cannot trust everything one learns online, oftentimes online communities can point patients toward helpful questions that enrich the conversations they have with their providers.


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The Potential of Generative AI to Power Patient Advocacy

Previously we looked at how generative AI tools can help patients cope with cancer.  In this article, we’ll discuss how you can leverage this technology to boost the impact of your advocacy. 

Understanding Generative AI

Generative AI is a type of artificial intelligence that learns from a large number of examples to understand how different types of content are made. Once it has learned, it can produce new, original content based on that knowledge. Examples of generative AI include ChatGPT, Google Gemini, and Microsoft Co-Pilot. Beyond text generation, AI can create images, suggest hashtags, and even draft YouTube descriptions or podcast scripts. 

Practical Applications of Generative AI for Patient Advocacy

We can use Generative AI to boost our advocacy in so many ways. Below are some ideas for you to consider.

1. Content Generation

Enhance your advocacy with AI-driven content creation tools. 

  • Idea Generation: Brainstorm topics for articles, blog posts, social media posts, or even scripts for videos and podcasts aligning with your advocacy goals. 
  • Content Drafting: Quickly generate initial drafts or outlines for your content, saving time and providing a starting point for further refinement. 
  • Language Improvement: Improve the readability, clarity, and impact of your writing with suggestions for alternative phrasing and sentence restructuring. Surfer AI Article Outline Generator (surferseo.com) is a free tool to assist with this. 
  • Headline Generation: Create engaging headlines and titles with AI-powered tools like the Free Title Generator by Semrush (www.semrush.com). 
  • Research Assistance: Gather relevant information, statistics, and references to enhance the credibility and persuasiveness of your content. (Note: The AI may cite sources that are inaccurate or do not exist, so it’s essential to verify these.) 

Example: When writing about a new treatment option, AI can brainstorm article ideas, generate an initial draft summarizing key points, and suggest studies to include.

2. Refine and Optimize Your Message

Here are some ways that AI can help you improve the quality and effectiveness of your advocacy content. 

  • Structural Guidance: Get recommendations on how to organize your content for maximum clarity. 
  • Readability: AI can suggest edits to improve readability. The Hemingway App (hemingwayapp.com) and Grammarly (www.grammarly.com) are excellent resources for this task. 
  • Search Engine Optimization: Expand your reach by incorporating AI-generated suggestions for relevant keywords, making your content more discoverable through search engines. 

Example: Use AI to improve the structure, language clarity, and flow of blog posts and articles before publishing them on your website.

3. Content Repurposing

Turn your existing content into new formats and reach new audiences to maximize its value. 

  • Blog to Video: Publish a blog post or article using a video you have already produced, expanding the reach of your content. Using tools like Video to Blog (www.videotoblog.ai) can streamline this process. 
  • Blog to Social Media: Distill key points from your blog posts into eye-catching social media snippets, infographics, or short videos. Lumen5 (www.lumen5.com) can transform your blog posts into engaging short videos, automatically extracting key points and pairing them with relevant visuals and music 
  • Podcast to Articles: Repurpose podcast episodes into written articles or summaries to expand your content’s lifespan. Try a tool like Podium (www.hello.podium.page) that transcribes your podcast and helps you turn the transcript into engaging articles. 
  • Long-form to Short-form Content: Extract highlights, quotes, or statistics from longer pieces and turn them into impactful social media posts or email newsletters. TLDR (www.tldrthis.com) is a browser extension that automatically summarizes articles, extracting key points and generating concise summaries. 
  • Data to Visuals: Transform raw data into informative infographics or charts, making complex information more understandable and shareable. Vizly (www.vizly.fyi) is an AI tool that creates interactive data visualizations, and you can try it out for free. 

Example: Take a webinar on advancements in cancer research and repurpose it into a series of short social media videos explaining key findings, blog posts highlighting patient stories, and an infographic summarizing breakthrough treatments.

4. Design Eye-Catching Visuals

Beyond text, generative AI can also help you create visual impact. 

  • Generate Custom Images: While advanced tools like DALL-E and Midjourney offer powerful text-to-image capabilities, free alternatives like the insMind AI Image Generator  (www.insmind.com)  provide a great starting point for those without access to paid tools. 
  • Enhance Existing Images: Improve the quality and style of your photos with AI-powered editing tools such as Canva (www.canva.com) and Craiyon (www.craiyon.com). 
  • Create Graphics and Infographics: Easily design informative infographics or engaging social media graphics using AI-assisted templates and tools like Canva or Visme (www.visme.co). 
  • Accessibility Features: Generate descriptive captions or alt text, making your posts more accessible and SEO-friendly on social media. SEOWriting.ai (wwwseowriting.ai) is an AI writing tool for SEO-optimized articles and blog posts. 

Example: Create an infographic illustrating the signs and symptoms of breast cancer.

5. Social Media Optimization

Maximize and optimize your social media impact in the following ways: 

  • Instagram Story Ideas: Brainstorm creative concepts for your Instagram stories and visually appealing ways to present your story for maximum impact. 
  • Hashtag Suggestions: Identify trending or niche hashtags that will help your posts reach a wider and more relevant audience. 
  • Optimal Posting Times: Use AI to analyze your audience’s activity patterns and determine the best times to post for maximum visibility and engagement. 
  • Video Storyboarding and Scripting: Develop storyboards for social media videos and generate a video script using a tool like Invideo (www.invideo.io). a free video editor that transforms text into videos.  
  • Podcast Scripting: Streamline podcast creation by using AI to generate scripts. Tools like HearTheWeb (www.heartheweb.com) can even transform text into dialogue-style podcasts (HearTheWeb offers one free episode, then starts at $15/month for 5 episodes). 
  • YouTube Optimization: Use Google’s AI tool, Gemini, to create YouTube descriptions and concise summaries to boost video discoverability and viewer engagement. 

Example: Generate a series of Instagram stories that highlight patient stories and use AI-suggested hashtags to amplify visibility and engagement.

6. Audience Engagement Tools

Foster engagement with your audience in the following ways: 

  • Polls and Surveys: Gather insights, opinions, and experiences from your followers with interactive polls and surveys. 
  • Challenges and Campaigns: Spark interest and action by developing AI-generated ideas for social media challenges or health-related campaigns that resonate with your audience. 
  • Interactive Content: Create quizzes, interactive maps, or other engaging formats that encourage active participation. 
  • Live Q&A Sessions: Host virtual Q&A sessions with AI-powered chatbots or moderators to answer questions in real time and foster a sense of community. 

Example: Launch a TikTok challenge encouraging healthy lifestyle choices among patients, using AI-generated campaign ideas and interactive content to drive participation and awareness. 

How to Get The Most from Generative AI

Generative AI is a powerful tool, but like any tool, its effectiveness depends on how you use it.  The more precise and detailed your instructions, the better the results. Instead of vague requests, give the AI a clear direction. For example, rather than simply asking for a “blog post about patient advocacy,” specify a working title, the intended goal (e.g., to educate, inspire, or mobilize), the target audience, and a structured outline of key points. 

Ethical Considerations

Generative AI offers immense potential to enhance your advocacy efforts, amplifying your reach and streamlining tasks. However, to harness its power responsibly, it’s imperative to prioritize accuracy, transparency, and authenticity in its use. 

To re-iterate, always thoroughly fact-check AI-generated content to avoid spreading misinformation.  Be upfront about your use of AI tools. In full disclosure, while I used ChatGPT to outline this piece, the content is shaped by my own expertise and passion for the topic.  

Finally, remember, that generative AI is a tool to enhance your work, not replace your unique voice and perspective. AI-generated content should serve as a springboard for ideas,  allowing you to focus your time and energy on developing a message that is authentically yours. By infusing your content with personal stories, and lived experiences you can create authentic connections with your audience ultimately strengthening the impact and resonance of your advocacy messages. 

Dr. Megan Haymart: Why Is It Important for You to Empower Patients?

Dr. Megan Haymart: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients? Expert Dr. Megan Haymart from the University of Michigan discusses the role of shared decision-making, how educating patients changes their approach to treatment options, and the benefits of taking more control in their care decisions.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Radhika Gogoi: Why Is It Important for You to Empower Patients?

Dr. Jeanne Palmer: Why Is It Important for You to Empower Patients?Dr. Jeanne Palmer: Why Is It Important for You to Empower Patients? Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Megan Haymart:

So for thyroid cancer, I think it’s important that most patients recognize that there’s a role for shared decision-making. So many times there’s preference-sensitive decisions, meaning there’s no right or wrong answer. And so a patient can think about the risks and benefits and what their priorities are and be involved in the decision-making process. And so I think it’s important to empower patients with knowing, one, you have a choice, so it’s not just me telling you what you need to do, I’m trying to like lay out all of the options, risks, benefits of all the different paths.

And then you have a choice in regards to your management, a choice in regards to your surveillance, and then within that, you should also feel that you have freedom to ask the questions that you want either during the clinic visit or by a patient portal afterwards, by, you know, or do you use reliable websites to find the information that you need. And so I think letting patients know that it’s a shared decision-making process, that they’re involved really empowers them to make a choice that they’re satisfied with and that they don’t have regret with down the road.

Dr. Jeanne Palmer: Why Is It Important for You to Empower Patients?

Dr. Jeanne Palmer: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients? Expert Dr. Jeanne Palmer from Mayo Clinic discusses how patient empowerment benefits patients, the importance of understanding a rare disease, and empowerment methods she finds especially helpful for her patients.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Radhika Gogoi: Why Is It Important for You to Empower Patients?

Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Jeanne M. Palmer:

So I think one of the most important things that I can provide is to make sure I provide good education so they have a good understanding of the pathophysiology of their disease, they have a good understanding of what they’re going to expect with regards to symptoms as well as what benefits they may or may not get from different therapies. It’s a very anxiety-provoking thing to have a rare disease that is generally something that we can’t always offer a cure for and something that they will have to live with for a very long period of time.

So I think understanding that and understanding what the expectations may be is really important. And I really can’t stress enough the importance of some of these patient advocacy groups that really help provide excellent education programs. I tell my patients to go to them whenever possible, just because then they don’t just have to hear me talking about something, they can hear multiple other people. Because sometimes just a difference in a nuance in the way you say something, it’ll all of a sudden click with the patient. And fully recognizing that as much as I try…sometimes I’m not able to convey that. When they hear it in a different way, it can really help.

Also encouraging second opinions. I always encourage patients. I say, “If you have any questions, get another opinion, I will help facilitate it,” to really make sure that they get the information that they need and they feel comfortable with their diagnosis and their plan of care. I think that goes a long way in helping alleviate some of their concerns, especially when you say, “Okay, well, why don’t you see this other person? They’re great. I know this person.” Then they know that, “Hey, we’re all on the same page. We’re all on the same team, working together to make sure that we can treat this patient as best as we can.”

Expert Insights on Overcoming Barriers to Myelofibrosis Care

Expert Insights on Overcoming Barriers to Myelofibrosis Care from Patient Empowerment Network on Vimeo.

How is myelofibrosis care impacted by barriers, and what are solutions for healthcare providers to overcome them? Experts Dr. Raajit Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne Palmer from Mayo Clinic discuss different access barriers that impact quality of care and ways that healthcare providers can help close disparity gaps for patients.

See More from EPEP MPNs

Related Resources:

Expert Insights on Overcoming Barriers to Myelofibrosis Care

Overcoming Barriers in Myelofibrosis Care: Challenges Faced by Patients and Providers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript: 

Dr. Nicole Rochester:

So we’re going to start by diving into the nuanced challenges and practice barriers in myelofibrosis care. We know that some of those factors may be related to socioeconomic factors and health disparities. So, Dr. Rampal, I’m going to start with you. What are the primary barriers in myelofibrosis care, and how might these barriers impact accessing effective treatment for myelofibrosis?

Dr. Raajit K. Rampal:

Well, I think it’s broad in the sense that, if we think about access to care, I think that part of the problem lies in underdiagnosis, and that is really on the end of the spectrum of access to primary care I’d say, are people getting in and getting regular blood count checks, the things that are going to tip somebody off that, you know, if somebody has a hematologic issue or problem, I think that is a big part of the entire discussion and spectrum here. And then the second thing is that this is a rare disease, and there are a handful of specialists throughout the world who deal with this.

And so making sure that patients have access to expert care, which is not to undermine the quality care that’s provided in the community, but this is more a question about do patients have access to, you know, clinical trials or to the most updated knowledge, and that to me really revolves around people being able to have access to tertiary care referral center who has a myelofibrosis expert. So I think those are some of the barriers, at least in my mind.

Dr. Nicole Rochester:

Thank you so much. And, Dr. Palmer, I’d love to get your insight as well. From your perspective, what are the primary barriers to accessing effective treatment, and what strategies can be implemented to overcome these barriers?

Dr. Jeanne M. Palmer:

So I agree with everything that Dr. Rampal said, but I’d also want to add to it, like many people would have to travel a distance to see that specialist. And so one of the ways that I’ve been able to try to overcome that thus far is by telemedicine. So being able to have that ability to contact somebody over the Internet, I think, especially if they’re getting very good care locally, just being able to provide that sort of expert additional advice about how to manage their disease, what different options are available.

Fortunately, this is a space where new drugs are coming pretty rapidly. So I think that having the ability to be able to weed through all of these different drugs, understand the pros and cons of them, and advise patients is good. And if they can’t make it to see you, then they can’t get advice about the medications nor can the providers. Because recognizing this is such a rare disease, a community provider has a lot to keep track of. So trying to keep track of something that impacts so few patients is hard to do. I think the other big barrier is cost and support for getting these medications.

These medications are all, unfortunately, quite expensive, and new drugs that are coming down the horizon will probably be so as well. So being able to find the right support for them, even when insurance covers it, it’s sometimes with a very large copay. So trying to handle access to these drugs, not only in the knowledge of which drugs to give, but also the ability to be able to pay for them.

Dr. Nicole Rochester:

Wonderful. Thank you both for elucidating some of those barriers. And you both mentioned that this is a rare disease and, Dr. Rampal, you also talked about expert care. And so I’d love to know, and I’ll start with you, Dr. Rampal, how do referral patterns impact treatment access in myelofibrosis and particularly for underserved populations?

Dr. Raajit K. Rampal:

This is a really interesting question, because things are changing in the sense that, I think at least in the New York area, but probably true elsewhere, there’s increasing consolidation of healthcare as hospital systems buy up smaller practices. And that means that referral patterns are going to change and are changing. There’s more of an impetus for docs to refer patients within their own health network. And they may or may not have access to expert care within their network. I think that’s one thing to keep in mind.

And the second is that, the elephant in the room here is that you have to have insurance to get into these networks. You have to have the right insurance. And do all of these big academic tertiary centers accept every kind of insurance? The answer is no, they don’t. So right off the bat, you have a systemic barrier, but then with the changing referral patterns, and I think likely certain insurances being more likely to be accepted in certain networks, you’ve already kind of fragmented the entire system. So, is there a streamlined way for patients to get in? Right now, I think the answer is no, there are a lot of barriers.

Dr. Nicole Rochester:

Thank you, Dr. Rampal. Dr. Palmer, do you have anything to add? And also if you can touch on what healthcare providers should be aware of and what they can pay close attention to with regard to these barriers that you and Dr. Rampal have discussed?

Dr. Jeanne M. Palmer:

Right, so I completely agree with everything he said. I think it’s a real challenge, especially as you parse apart these different healthcare systems. I think one of the important things for patients to know and what providers can help with is providing sort of access to some of the patient advocacy sites. On these patient advocacy sites, they can find the name of different providers, and sometimes that helps them call in to get a referral. Now, the insurance coverage is another challenge that’s a lot harder to manage. But I think one thing that patients can do is if within their own network, there isn’t an expert, at least being able to go to these patient advocacy sites, finding out who they should, who they can go see.

Dr. Nicole Rochester:

Wonderful, thank you. Well, we’ve been talking about how certain populations may experience more barriers. And certainly we know that’s at the root of health and healthcare disparities. So I want to move and start to talk a little bit about cultural competency. And I’ll go back to you, Dr. Rampal, what role do you believe cultural competency plays in addressing barriers in myelofibrosis care?

Dr. Raajit K. Rampal:

Yeah, I think one of the major tasks is to be aware that cultural competency is important. That to me is sort of the first step in everything. And in making this a little bit more granular. Not every patient approaches their disease or their diagnosis in the same way. And a lot of that is informed by their cultural beliefs, their community. And this is something, you know, living in a place in like New York where we see people from all different cultures, this is a striking thing because there are people who, for example, you know, they come from, you know, strong religious faith backgrounds. Their approach to things is different.

In some respects, they approach the disease and the need for treatment in a very different way than people who come from other cultural communities or those who are, let’s say, even not coming from a religious setting. But if you’re not aware of those and you try to put the same sort of treatment paradigm on all patients, you’re going to run into conflicts at some point. So I think to me, the first step is to be aware that these things influence how people perceive their disease, how they perceive the treatments or their desire to even be treated. But if you’re not aware of those things at the outset, then you’re going to run into those issues, I think.

 


Share Your Feedback

What Can Patients Do to Access Better Colon Cancer Care?

What Can Patients Do to Access Better Colon Cancer Care? from Patient Empowerment Network on Vimeo.

What can patients do to access quality colon cancer care? Dr. Suneel Kamath shares tips on how to advocate for yourself, the importance of quality care versus convenient care, and colon cancer resources.

Dr. Suneel Kamath is a medical oncologist at the Cleveland Clinic Cancer Institute. Learn more about Dr. Kamath.

Download Resource Guide

See More from DETECT Colon Cancer

Related Resources:

Why Are Colon Cancer Cases in Young People on the Rise?

Why Are Colon Cancer Cases in Young People on the Rise?

What Are Common Colon Cancer Health Disparities?

What Are Common Colon Cancer Health Disparities?

What Are Colon Cancer Screening Guidelines?

What Are Colon Cancer Screening Guidelines?


Transcript: 

Katherine:  

If patients feel like they’re not receiving good care or they feel like they’re being treated unfairly, what steps should they take to access better overall care?  

Dr. Kamath:  

That’s a touchy one. It makes me sad that that even happens, but it does. I would say just never be afraid to be an advocate for yourself. To me, it’s your life and the consequence of bad healthcare, unfortunately, is not going to be on those providers. It’s going to be on you. Unfortunately, I do hear from a lot of people they worry about burning bridges, or annoying someone, or angering the doctors that they’re working with. I would tell them, “Don’t worry about that.” I don’t think people need to care about my feelings or the doctor’s feelings about the situation. 

You need to make sure you’re getting the best healthcare possible. Always feel comfortable getting a second opinion, going to a bigger center. I always recommend go to the main hospitals in your area. In the U.S. especially, I think we’re too focused on convenient healthcare and not the quality of the healthcare. I would definitely advocate, even if it takes you an hour to drive downtown to Duke or Johns Hopkins in your area, or the Cleveland Clinic, or the Mayo Clinic, or whatever, it’s worth that time compared to the person who just might be five or 10 minutes from you.  

Katherine:  

Right. Are there resources available now that might be useful for people who need, want more information?  

Dr. Kamath:  

Yes, are you talking about things that they could find online or read about? It’s in terms in of accessing care or just generally about … 

Katherine:  

Yeah, accessing care.  

Dr. Kamath:  

Yeah. I think there, again, I would go back to the American Cancer Society. The other ones that are really great, too, are – for colorectal cancer, especially, there are a number of really great patient advocacy organizations. The two that are coming to mind are the Colorectal Cancer Alliance and then Fight CRC. Both of them have phenomenal resources as far as patients who have gone through the whole journey and various phases of the journey. What I love for them, too, is usually there’s somebody that can represent your area in those settings, in those support groups and whatnot.  

I definitely think they’re a great resource in helping people find out who are the best doctors in your area. How did you get connected with them? Unfortunately, we all have phone numbers online and whatnot to find us. But we all know when you call them you end up in this interminable loop, it seems like, sometimes to get an appointment. It’s hard to navigate it all. I think a lot of times these patient advocacy organizations can be great bridges to both finding who the right people are and how do you best get in with them.  

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers

HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers from Patient Empowerment Network on Vimeo.

Explore the complex challenges and barriers in myelofibrosis care with Dr. Raajit K. Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne M. Palmer from the Mayo Clinic. Gain insights into therapeutic inertia, effective strategies for overcoming care barriers, and enhancing patient-centric care to improve myelofibrosis outcomes.

Related Resources:

Tracking MPN Symptoms: Strategies for Managing Disease Burden

Tracking MPN Symptoms: Strategies for Managing Disease Burden

Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms

Are There Non-Pharmacologic Strategies for Managing Myeloproliferative Neoplasms?

Explaining Myeloproliferative Neoplasm Disease Progression to Patients

Explaining Myeloproliferative Neoplasm Disease Progression to Patients


Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients EPEP program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. In this healthcare provider roundtable, we are discussing breaking through myelofibrosis practice barriers.

We’re going to talk about the nuanced challenges and practice barriers in myelofibrosis care. How do patient socioeconomic factors impact treatment access? We will look at gaps in the field and overcoming practice barriers such as lack of awareness, outdated practices, and therapeutic inertia, while also addressing solutions to enhance patient-centric care in myelofibrosis for improved patient outcomes. 

It is my privilege to be joined by Dr. Raajit K. Rampal of Memorial Sloan Kettering Cancer Center. Dr. Rampal is a clinical translational investigator whose research focuses on the genetic events that contribute to the development and progression of leukemia and myeloproliferative neoplasms. Thank you so much for joining this EPEP program, Dr. Rampal. 

Dr. Raajit K. Rampal:

Thanks so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

It’s also an honor to be joined by Dr. Jeanne Palmer, hematologist at Mayo Clinic. Dr. Palmer’s interest is in identifying novel targeted therapies for patients with myeloproliferative neoplasms. She strives to offer innovative therapies to patients in all stages of their disease through clinical trials. Thank you so much for joining us, Dr. Palmer.

Dr. Jeanne M. Palmer:

Thanks for having me.

Dr. Nicole Rochester:

So we’re going to start today’s discussion by diving into the nuanced challenges and practice barriers in myelofibrosis care. We know that some of those factors may be related to socioeconomic factors and health disparities. So, Dr. Rampal, I’m going to start with you. What are the primary barriers in myelofibrosis care, and how might these barriers impact accessing effective treatment for myelofibrosis?

Dr. Raajit K. Rampal:

Well, I think it’s broad in the sense that, if we think about access to care, I think that part of the problem lies in underdiagnosis, and that is really on the end of the spectrum of access to primary care I’d say, are people getting in and getting regular blood count checks, the things that are going to tip somebody off that, you know, if somebody has a hematologic issue or problem, I think that is a big part of the entire discussion and spectrum here.

And then the second thing is that this is a rare disease, and there are a handful of specialists throughout the world who deal with this. And so making sure that patients have access to expert care, which is not to undermine the quality care that’s provided in the community, but this is more a question about do patients have access to, you know, clinical trials or to the most updated knowledge, and that to me really revolves around people being able to have access to tertiary care referral center who has a myelofibrosis expert. So I think those are some of the barriers, at least in my mind.

Dr. Nicole Rochester:

Thank you so much. And, Dr. Palmer, I’d love to get your insight as well. From your perspective, what are the primary barriers to accessing effective treatment, and what strategies can be implemented to overcome these barriers?

Dr. Jeanne M. Palmer:

So I agree with everything that Dr. Rampal said, but I’d also want to add to it, like many people would have to travel a distance to see that specialist. And so one of the ways that I’ve been able to try to overcome that thus far is by telemedicine. So being able to have that ability to contact somebody over the Internet, I think, especially if they’re getting very good care locally, just being able to provide that sort of expert additional advice about how to manage their disease, what different options are available. Fortunately, this is a space where new drugs are coming pretty rapidly.

So I think that having the ability to be able to weed through all of these different drugs, understand the pros and cons of them, and advise patients is good. And if they can’t make it to see you, then they can’t get advice about the medications nor can the providers. Because recognizing this is such a rare disease, a community provider has a lot to keep track of. So trying to keep track of something that impacts so few patients is hard to do. I think the other big barrier is cost and support for getting these medications.

These medications are all, unfortunately, quite expensive, and new drugs that are coming down the horizon will probably be so as well. So being able to find the right support for them, even when insurance covers it, it’s sometimes with a very large copay. So trying to handle access to these drugs, not only in the knowledge of which drugs to give, but also the ability to be able to pay for them.

Dr. Nicole Rochester:

Wonderful. Thank you both for elucidating some of those barriers. And you both mentioned that this is a rare disease and, Dr. Rampal, you also talked about expert care. And so I’d love to know, and I’ll start with you, Dr. Rampal, how do referral patterns impact treatment access in myelofibrosis and particularly for underserved populations?

Dr. Raajit K. Rampal:

This is a really interesting question, because things are changing in the sense that, I think at least in the New York area, but probably true elsewhere, there’s increasing consolidation of healthcare as hospital systems buy up smaller practices. And that means that referral patterns are going to change and are changing. There’s more of an impetus for docs to refer patients within their own health network. And they may or may not have access to expert care within their network. I think that’s one thing to keep in mind.

And the second is that, the elephant in the room here is that you have to have insurance to get into these networks. You have to have the right insurance. And do all of these big academic tertiary centers accept every kind of insurance? The answer is no, they don’t. So right off the bat, you have a systemic barrier, but then with the changing referral patterns, and I think likely certain insurances being more likely to be accepted in certain networks, you’ve already kind of fragmented the entire system. So, is there a streamlined way for patients to get in? Right now, I think the answer is no, there are a lot of barriers.

Dr. Nicole Rochester:

Thank you, Dr. Rampal. Dr. Palmer, do you have anything to add? And also if you can touch on what healthcare providers should be aware of and what they can pay close attention to with regard to these barriers that you and Dr. Rampal have discussed?

Dr. Jeanne M. Palmer:

Right, so I completely agree with everything he said. I think it’s a real challenge, especially as you parse apart these different healthcare systems. I think one of the important things for patients to know and what providers can help with is providing sort of access to some of the patient advocacy sites. On these patient advocacy sites, they can find the name of different providers, and sometimes that helps them call in to get a referral.

Now, the insurance coverage is another challenge that’s a lot harder to manage. But I think one thing that patients can do is if within their own network, there isn’t an expert, at least being able to go to these patient advocacy sites, finding out who they should, who they can go see.

Dr. Nicole Rochester:

Wonderful, thank you. Well, we’ve been talking about how certain populations may experience more barriers. And certainly we know that’s at the root of health and healthcare disparities. So I want to move and start to talk a little bit about cultural competency. And I’ll go back to you, Dr. Rampal, what role do you believe cultural competency plays in addressing barriers in myelofibrosis care?

Dr. Raajit K. Rampal:

Yeah, I think one of the major tasks is to be aware that cultural competency is important. That to me is sort of the first step in everything. And in making this a little bit more granular. Not every patient approaches their disease or their diagnosis in the same way. And a lot of that is informed by their cultural beliefs, their community. And this is something, you know, living in a place like New York where we see people from all different cultures, this is a striking thing because there are people who, for example, you know, they come from, you know, strong religious faith backgrounds. Their approach to things is different.

In some respects, they approach the disease and the need for treatment in a very different way than people who come from other cultural communities or those who are, let’s say, even not coming from a religious setting. But if you’re not aware of those and you try to put the same sort of treatment paradigm on all patients, you’re going to run into conflicts at some point. So I think to me, the first step is to be aware that these things influence how people perceive their disease, how they perceive the treatments or their desire to even be treated. But if you’re not aware of those things at the outset, then you’re going to run into those issues, I think.

Dr. Nicole Rochester:

Thank you so much, Dr. Rampal. Well, we’ve been talking about the barriers that patients face. Dr. Palmer, can you speak to some of the obstacles or barriers faced by healthcare providers themselves when treating myelofibrosis patients?

Dr. Jeanne M. Palmer:

I think one of the challenging pieces, you know, I know in Arizona, we have a pretty big catchment area, because there’s not only the Phoenix metropolitan area, but there are a lot of smaller communities scattered throughout Arizona. And I think one of the issues that we have is, let’s say I want to start somebody on a new medication that potentially has a side effect of anemia or something.

Being able to manage them remotely is difficult, because a lot of times they may require a blood transfusion. Can they even get a blood transfusion where they’re at? Can they afford the 5-hour drive down to Phoenix to get that? So I think sometimes, even access to simple things, well, I guess it’s not that simple, but things like blood transfusions can be hard. Fortunately for labs, you’re often able to get them most places through various Labcorp, Quest, et cetera. But sometimes any type of infusional treatment can be really, really hard to get.

Dr. Nicole Rochester:

Thank you. Do you have anything to add, Dr. Rampal, with regard to barriers faced by providers?

Dr. Raajit K. Rampal:

No, I actually think that’s an important, that’s a really important thing. Because it depends on your area of the country and what access to resources patients have locally. If we’re thinking about this as sort of a hub and spoke model, that may be the outdated model. In other words, it’s not that people can afford to, you know, from a financial perspective or a time perspective, come into the major center and then go back. They need to get access to care locally, but you have to have the infrastructure, the healthcare infrastructure, if you will, to deliver that care. And that’s a difficult problem in many parts of the country.

Dr. Nicole Rochester:

Absolutely. Wonderful. Well, you talked about something maybe being outdated. That’s a perfect segue to our next conversation. And so I’ll start with you this time, Dr. Rampal. Can you speak to unforeseen or maybe outdated practice-related barriers that may hinder your work and that of your colleagues with regard to myelofibrosis treatment?

Dr. Raajit K. Rampal:

Yeah, I guess my broad answer to this is that things are changing rapidly and the pace of change is accelerated. In other words, when we think about myelofibrosis, the treatment paradigm probably, if you think about the last 15 years, in the early part of that, things were kind of relatively static and now they’re not as new knowledge emerges, as new treatments emerge. And the challenge here, again, speaking in general terms is, as Dr. Palmer pointed out, this is a rare disease. It’s not something that’s frequently seen by physicians in the community.

So how do you keep people up to date on something that is not the majority of what they do? It’s a very small percentage of what they see and do. And that’s an ongoing challenge. And I’m not sure there’s any perfect solution to that except for education. It’s just a question of how do you deliver that in a time-effective manner so that people can devote some time to getting up to date? But it is ultimately a good problem that things are changing rapidly.

Dr. Nicole Rochester:

Absolutely. And, Dr. Palmer, do you have any solutions or actions or things that healthcare providers can do as this treatment landscape rapidly evolves?

Dr. Jeanne M. Palmer:

I think it’s a real challenge because even when we look at sort of the dogma of like, well, what’s the response criteria? I mean, when you’re thinking of a lot of like solid tumors, you think, okay, did the tumor shrink a certain amount? Did the tumor go away? With myelofibrosis, when we think about even response criteria, it’s really challenging.

So I think I agree education is part of it, and it’s trying to figure out how to distill down the really important components of how do you manage these patients day-to-day? We can talk about the COMFORT study and the MOMENTUM study and everything else all we want to, that tested, were major studies that tested the drugs that we use, but then the nuances of how to manage them day-to-day is something that I think we could probably improve upon how we educate.

Dr. Nicole Rochester:

Thank you. So as we move on to our final topic, we’re going to start talking about collaborative care. You all have spoken about this being a rare disease, the need for expert care, the fact that not everyone has access to that expert care. And so the reality is that it’s going to take more than just experts like yourself in order to manage these patients. And so, Dr. Palmer, I’m going to start with you. What are the key components of an effective collaborative care ecosystem for myelofibrosis? And how can healthcare providers integrate these components to ensure comprehensive patient care?

Dr. Jeanne M. Palmer:

Well, I think one of the most important things is really making sure you’re having conversations with the patients, are able to sort of elucidate what’s really important to them and how they’re feeling. I think many patients actually are very aware of things that they want to or don’t want to do. And so, and then in a disease like this one, where there are lots of different options, there are also just nuances in the way you sort of treat things like, okay, do you want to take this side effect or that side effect? Or how do you want to approach this? Being able to have those conversations to really get their input on it is very important.

That’s one of the reasons I really enjoy treating this disease is because it’s not so regimented in how you do it. It becomes really a conversation, understanding how the patient’s feeling, understanding the side effects that they’re having, so you can better determine how you should continue with the therapy.

Dr. Nicole Rochester:

Wonderful. I appreciate that. And I appreciate that you brought in the patient perspective when we’re speaking about collaborative care, because, of course, they need to be involved in their part of their medical team. Dr. Rampal, what about the healthcare providers? How can you cultivate a collaborative ecosystem with other healthcare providers as you all provide care for myelofibrosis?

Dr. Raajit K. Rampal:

Part of my advice here is simple, which is to pick up the phone. And I’ll tell you why I put it that way. I think that what happens…and this is something I always emphasize to our trainees, because I don’t think this is something that’s taught. This is, as they call it, a soft skill. But there is, I think, a tendency, at least in academic centers, for people to want to ensconce themselves in the ivory tower. And that doesn’t help, because you have to communicate with the people taking care of the patients.

And the simplest way to do that is to pick up the phone and call the referring doctor who they’re seeing in the community, and say, “Listen, I saw your patient. Here’s what I think. I’d like to share the care with the patient. I can see them every six months. Please keep me updated. This is my cell phone number. Call me if there’s a problem.” That, to me, has been the most simple, effective tool to build collaborative partnerships with physicians in the community. And it’s not something that I think is taught, but we have to do that. We have to break down these barriers between specialty care or academic care and community care. I think that’s one of the best things we can do to help patients get the care they need.

Dr. Nicole Rochester:

And what a simple tool, just picking up the phone. We often try to create complex technological solutions. And you’re right. It’s just as simple as picking up the phone and having that one-on-one conversation. So thank you for adding that. Dr. Palmer, how can multidisciplinary teams be best utilized to improve outcomes in myelofibrosis care?

Dr. Jeanne M. Palmer:

So it always takes a village to treat a patient. I think that making sure that you have…that your social workers or case managers have good access to different resources to help with patients. As I said, one of the biggest challenges is paying for these drugs. So having a good team of social workers or case managers who are really able to tap into resources, so patients can get access to these drugs is really important. Making sure that you have good nursing support.

One of the things that’s really important is I can ask my nurse, “Hey, look, can you check in on this person in the next few weeks to see how they’re doing with their new medication?” And even having good APPs. I’m very fortunate to have a couple of APPs I work with who are very knowledgeable about MPN. So I don’t worry that if I’m not there to see the patient that somebody else who’s seeing the patient won’t be able to assess them in a good way. So I think having that whole cadre of people around you to support the care of that patient is critical.

Dr. Nicole Rochester:

Absolutely. And I appreciate that you lifted up not just the medical providers, but the case managers as well, particularly with some of the challenges that we’ve been talking about today. And, Dr. Rampal, do you have any specific solutions for how to achieve seamless coordination among the different specialists that may be involved in the patient’s care?

Dr. Raajit K. Rampal:

No. I think it’s a difficult problem. I’m not sure there’s a clear solution. Even the simple thing of medical record systems not talking to each other; people use different medical record systems, those things all create barriers. I think that…the only thing that I think is worthwhile is making sure that you’re actively managing this communication.

In other words, when you write a note in your electronic medical system, you’re assuming that it’s getting sent and being read by the referring physician and all of that, but that’s a passive way of thinking about this. And one has to be active. One has to make sure that if there are key things to be communicated amongst all of the people taking care of a patient, as I said earlier, a simple thing is pick up the phone or make sure you have communication about your ideas and plans for the patient so that the other people, providers involved in that patient’s care are all aware of that.

Dr. Nicole Rochester:

Thank you so much. Yeah, the electronic medical record does not sometimes live up to those expectations, which takes us back to what you said earlier, picking up the phone. It’s time to wrap up our roundtable. And I must say I have enjoyed this conversation so much. And as we bring this program to a close, I’d love to get closing thoughts from each of you.

And so I’ll start with you, Dr. Palmer. What is the most important takeaway message that you want to leave other healthcare professionals who may be listening and watching this program around how we begin to eliminate barriers in myelofibrosis care?

Dr. Jeanne M. Palmer:

Well, I think one of the key factors here is to make sure that you understand what you know and then understand what you don’t know. And there are lots of us out there who are very willing to help and support in any way we can. I think this is a really challenging disease to treat. Speaking as someone who started to treat it mid-career, it was something that I realized that it’s not just about reading papers, there are a lot of nuances to it. So really not having the fear of asking.

Also, to really tap into patient advocacy organizations. There are a number of really good organizations that provide excellent education opportunities for patients and making sure that patients are aware of those so that they can be able to do their own Google search, but not necessarily in a non-constructive fashion. So really tapping into those patient advocacy groups is really important.

Dr. Nicole Rochester:

Wonderful. And what about you, Dr. Rampal? What’s a closing takeaway message for our audience?

Dr. Raajit K. Rampal:

I think open lines of communication. I think that from the perspective of providers in the community, we want to know that you have questions. We want to make ourselves available to answer those questions. And so I would much rather be inundated with questions specific to a patient’s care than not to hear from somebody.

And then I think from the specialist side of things, we have to make ourselves available to address these questions and make ourselves accessible. So I think in as much as possible, opening up lines of communication is one of the keys to overcoming some of these barriers. Obviously, there are systemic barriers here that require systemic solutions, but on a granular level I think those are the things we can do.

Dr. Nicole Rochester:

Well, I want to thank you both. Thank you, Dr. Palmer. Thank you, Dr. Rampal. As always, this has been a very informative conversation. We talked about many of the barriers to myelofibrosis care. We talked about some of the systemic and structural barriers, but we’ve also talked about barriers that healthcare providers can overcome.

And ultimately, the take-home message for me is communication. Communication with our patients in a way that they can understand, in a way that they like to receive information, having respect for cultural differences, and communication and collaboration with each other. So again, thank you both for all of the information that you shared. And thank you all for tuning in to this Empowering Providers to Empower Patients Patient Empowerment Network Program. I’m Dr. Nicole Rochester. Thank you for watching.


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