Tag Archive for: patient-centered care

HCP Roundtable: Overcoming Practice Barriers to Enhance Small Cell Lung Cancer Care

How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer (SCLC)? Dr. Nagashree Seetharamu from Northwell Health and Nurse Practitioner Beth Sandy from Penn Medicine explore actionable clinical approaches and strategies to address the unique challenges in SCLC care.

Download Guide | Descargar Guía

See More from EPEP SCLC

Related Resources:

Improving Communication Around Lung Cancer Biomarker Testing

Improving Communication Around Lung Cancer Biomarker Testing 

Methods to Improve Lung Cancer Physician-Patient Communication

Methods to Improve Lung Cancer Physician-Patient Communication 

Patient-Provider Relationship Role in Lung Cancer Biomarker TestingPatient-Provider Relationship Role in Lung Cancer Biomarker Testing

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients 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. How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer? What strategies can be implemented to ensure that patients with extensive stage small cell lung cancer have access to participate in clinical trials and to receive cutting-edge therapies?

It is my privilege to be joined by Dr. Nagashree Seetharamu of Northwell Health. Dr. Seetharamu is an Associate Professor of Medicine at the Donald and Barbara Zucker School of Medicine at Hofstra Northwell Health, and has established a reputation at the national level through her active involvement and leadership within influential oncology organizations that steer the direction of clinical cancer care and research across the United States and globally. Thank you so much for joining this EPEP program, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

Thank you.

Dr. Nicole Rochester:

It is also my honor to be joined by Ms. Beth Sandy, a thoracic oncology nurse practitioner at the University of Pennsylvania Abramson Cancer Center. In addition to regularly presenting at several national and international nursing and thoracic oncology meetings, Ms. Sandy has published in a number of peer-reviewed medical and nursing journals. Thank you so much for joining this EPEP program, Ms. Sandy.

Beth Sandy:

Thank you for having me.

Dr. Nicole Rochester:

I’d like to start our discussion by talking about current practice barriers in small cell lung cancer care. So I’m going to start with you, Dr. Seetharamu. What are the barriers to implementing patient-centered care in the management of small cell lung cancer, and what are we learning from the existing evidence?

Dr. Nagashree Seetharamu:

Yeah, thank you. It’s a great question. I would start by saying that I think the first thing is really limited treatment advances compared to other types of cancers and clinical trial access. So compared to other types of cancers, including non-small cell lung cancer, we have very, you know, fewer options. Patients, despite all the advances, the outcomes are still suboptimal. Many of our patients present with very advanced disease and have multiple other comorbid conditions. So it makes it difficult to deliver optimal care or to enroll patients in clinical trials. In addition, we do know that palliative care improves outcomes in non-small cell lung cancer. We do not have this data as much in small cell, and there is a stigma around it. People do not avail palliative care options, which are perhaps most appropriate for patients with small cell lung cancer.

Lastly, I think there’s also streamlining the processes. We do have the low dose CT scan, lung cancer screening, fewer patients avail it. With increased availability, increased acceptance and increased uptake, probably we can see more small cell lung cancer cases in early stages that will ensure cure.

Also, there are many of our patients with small cell lung cancer have lapses in supportive, you know, social support, and that’s something that we are working with. There’s also quite a bit of disparity when we talk about small cell lung cancer, and that’s been extensively published. So delays from screening to diagnosis to treatment.

Dr. Nicole Rochester:

Thank you so much, Dr. Seetharamu. So given those barriers that you just outlined for us, how can healthcare providers overcome those practice barriers to actually enhance care for patients facing small cell lung cancer?

Dr. Nagashree Seetharamu:

So I think there…I have a few ideas, a few suggestions. I think first and foremost, is to make sure that the screening program is well-adapted. We still see less than 10 percent of patients being screened, so that is something important. Hand in hand with that is tobacco cessation. So decreasing the incidence, early detection is number one and number two for sure. In addition to that, once patients are diagnosed and are presenting, you know, improving the, or having streamlined processes for diagnosis from the patients enter care to the time they start treatment, reducing the time to treatment is extremely important.

We are really kind of sitting on a time machine, you’re really trying to get things done in a very quick order. So streamlining the processes, whether the patient is in the hospital or presents as an outpatient. Lastly, making sure that clinical trials, if they’re available, making sure that patients are screened for it, making clinical trials available to patients, making criteria broader so that patients can be enrolled. And then ensuring that everyone within a particular health system or network is aware of recent advances, and patients get optimal care wherever they are located throughout the country.

Dr. Nicole Rochester:

Thank you very much. I’m going to turn to you, Ms. Sandy. As a nurse practitioner in this space, what is your perspective regarding the primary barriers to accessing effective patient-centered care for small cell lung cancer? And then similarly, what are some strategies that you believe can be implemented to overcome these barriers?

Beth Sandy:

Thanks, Dr. Rochester. I think Dr. Seetharamu covered a lot of the barriers really, it’s getting patients to treatment quickly. As we know, this disease is very aggressive. So, this is not a disease where a patient might say, “Well, I have a two week trip to Europe planned. I’d like to go there and then start treatment.” Actually, in non-small cell lung cancer maybe, but in small cell lung cancer, it’s so important to get them started very quickly on treatment because of the aggressive nature of the disease. And it is a very chemo-sensitive disease, so they may feel better very quickly.

One thing that we do in our practice is if we see that a patient is coming in who’s newly diagnosed with small cell lung cancer, whether it be extensive or limited stage, many times our nurse navigator is looking at this in advance and we’re pre-starting the chemotherapy before they even get there. Because many of these regimens are a three-day regimen, so we want to make sure that our next three days are available for infusion that we get this patient started right away.  So sort of looking ahead can be really helpful, especially if the patient’s coming on a Thursday or Friday, we’re not open generally on the weekends to give chemo, so we’ll make sure that we get them scheduled that following week. Again, getting these patients to treatment very quickly can help them feel better quickly.

Dr. Nicole Rochester:

Wonderful, thank you both. So I’m going to go back to you, Dr. Seetharamu. What are the gaps in current research regarding patient-centered care in small cell lung cancer, and how can these gaps be addressed?

Dr. Nagashree Seetharamu:

Yeah, I think I alluded to this a little earlier, but the…mean, this is kind of a pitch for funding agencies. I think the funding, first of all, it starts there. I think the funding that is available for other types of cancers perhaps is not so much for small cell. Despite decades of extensive research, we are still kind of stuck in the same regimen that we used to use decades ago, with a few modifications. So, first of all, novel treatment ideas, novel treatment regimens definitely can be hugely beneficial for these patients.

Secondly, it is also making sure that patients are actually able to get enrolled in the studies. A lot of these studies are overly exclusionary for reasons that it shouldn’t be. And, for example, if a patient receives a treatment as inpatient, like Ms. Sandy said, a lot of our patients get treated in the hospital, and they get excluded from the first-line regimens many times. So that’s something that can be accommodated. Clinical trials should be tailored around real world experience, not just based on what might be beneficial in preclinical models or some early experience. That’s the second thing.

Thirdly, I think small cell lung cancer, while we use the same term, I think it’s a heterogeneous disease. Using biomarkers to kind of stratify patients or subgroup patients, and then tailor regimens specific to, for example, when a transformed small cell lung cancer, when non-small cell lung cancer transforms to small cell, it’s still small cell lung cancer. From a histological perspective, it looks very similar, biologically it’s a very different disease. So I think it is important to kind of stratify or differentiate those subgroups and then create clinical trials that are more specific, you know, patient-centric like you mentioned. And I think lastly, mostly it’s important to make sure that the disparities are addressed. The socioeconomic disparities, racial barriers are addressed while we are talking about small cell lung cancer research. I think it should be an integral part of every clinical trial.

Dr. Nicole Rochester:

Absolutely. Thank you for highlighting that, Dr. Seetharamu. So, Sandy, we’ve been talking about the barriers that patients face with regard to treatment. Can you speak to some of the obstacles or barriers that are faced by healthcare providers with regard to treatment for small cell lung cancer?

Beth Sandy:

Yeah. Well, there are a couple ways to look at it. First, if you just look at a clinical trial perspective, sometimes it’s hard for us to enroll patients with small cell lung cancer for several reasons. You know, when we enroll in a clinical trial, a lot of times we need to wait for a slot to open. Well, we don’t have time to wait for a slot when they have small cell lung cancer. Again, it’s a very aggressive disease that’s rapidly moving. So we run into this barrier all the time here because they’ll say, “Well, I have a slot that opened up in three or four weeks or four weeks.” I don’t want to wait that long to treat my patient. So I think when we design these trials, we have to think about those kinds of things.

Another point of putting patients on clinical trials is a lot of trial ineligibility criteria is for patients with brain metastases, but in small cell lung cancer, we know that like up to 75 percent of them are going to develop brain mets over the lifetime of their disease. So it’s not really a real world trial if we exclude patients with brain metastases. So we need to design our trials in a good way.

There are a lot of other barriers that we end up facing. Some of the treatments for small cell lung cancer, especially a very new treatment that’s a BiTE therapy, a bispecific T-cell engager, is very hard to administer. It requires an overnight admission for the first two treatments, it has taken us actually a pretty long time to operationalize how we were trying to give this, so it’s not easy. And we finally have figured out how to give this, but this is a drug that holds a lot of promise for our patients, but it is hard for us to administer, and it’s hard for patients as well, because then they have to say, “Oh, I have to block off an entire day for this.”

So, some of these treatments are not easy. Most treatments for small cell lung cancer are not fancy targeted therapies that can minimize toxicity. These are chemotherapies that can cause nausea, fatigue, lowering of blood counts, the majority of the treatments. So if our patients aren’t healthy, robust, and able to deliver, or we can deliver the treatment, but they’re not able to handle the treatment, that’s also worrisome and can cause a barrier for us. So they’re not easy treatments. We need to really do our best to help support the patient and help figure out from an operationalization, there I made up a word, [laughter] but standpoint on how we can administer these safely, but in a quick, efficient way to these patients.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. So both of you have really done a great job elaborating the many barriers. The barriers that patients face, the barriers that healthcare providers face. Are there any tactical strategies or things that either of you or your institutions have done to actually address some of these barriers, some of the challenges that you all have mentioned?

Beth Sandy:

I mean, for us, our nurse navigator is huge. She is a dedicated lung cancer nurse navigator. She’s looking at these patients in advance, when they’re new patients and really trying to say, okay, if they have small cell, we need to get them in quickly. You know, if our new patient wait is two weeks, she’ll say, “Well, this one needs to be prioritized. We need to see them within a week.” She’ll say, “We need to make sure that we have the ability to treat them within a week. We want to really get on top of that quickly.” So that’s been, I think for us, one of the biggest helps with small cell lung cancer.

Dr. Nicole Rochester:

Wonderful. You have anything to add, Dr. Seetharamu?

Dr. Nagashree Seetharamu:

Yeah, I mean, it’s… similarly I think our navigator program is extremely helpful. In addition to that, I think, I know with the bispecific that was mentioned, you know, the tarlatamab-dlle (Imdelltra), we have a process in place, where it’s very streamlined, patients get admitted. The whole protocol is in place for admission and then subsequent treatment as outpatient.  With larger centers where there are multiple, larger institutions with multiple centers that might be a little smaller and not able to monitor patients while they’re receiving this treatment, we have adapted this approach where the first two treatments are given at the main hub, and that’s also been adapted by a few other institutions in the neighborhood where they refer the patients to us just for those first two infusions and when patients are settled and ready to continue the treatment, they’re able to continue it in a more community-based setting.

So that’s something I think that can be done in those regions where patients are referred to places where you can call hubs where these treatments can be initiated and then continued in their regional places so not to inconvenience the patients.

I think for this particular cohort of patients, social work involvement is extremely helpful, in addition to addressing the support systems, transportation assistance, financial support systems, and then involving palliative care early on has been something that has been extremely helpful. This is a multidisciplinary disease, despite that the majority of the patients are on systemic treatment, it is a multidisciplinary disease. We have multiple, we touch minor patients, touch multiple departments. And again, the role of nurse navigator is extremely helpful, because they can help make sure the patients are not inundated by these appointments.

Dr. Nicole Rochester:

Thank you both. Thank you very much for sharing that. So we’re going to shift a little bit and talk about strategies and innovations that may offer enhanced care for patients and families facing small cell lung cancer. We know that survival outcomes in small cell lung cancer remain challenging as both of you have pointed out, particularly for those with extensive stage small cell lung cancer despite incremental improvements in treatment strategies. For your colleagues that are watching this program, what are some strategies and innovations that may offer improved survival outcomes? Now I’ll start with you, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

I think having your group in place, identifying the providers that are dedicated to this disease. Making sure there are processes in place from early diagnosis through the treatments and seeing multiple providers is in place. Making sure that every treatment, there’s a pathway attached to it, there’s a protocol attached to it so that we are not scrambling last minute. Like Ms. Sandy said, it’s the same issue. It’s a three-day regimen. The first line, we want to make sure that, you know, the treatment starts. We are open on Saturdays too.

So, you know, it has to be Monday through Thursdays. You know, simple things as that may become very challenging. In patients with the brain metastases, making sure that they see the providers also in a very timely fashion. Sometimes the urgency may not be realized by other providers, because they’re not used to just seeing small cell lung cancer patients. Just making sure that that is communicated with teams. Yeah. I mean, just streamlining the processes as much as possible. Empowering the patients to understand their disease and making sure that they ask the right questions and be, you know, willful, you know, like complete participants, partners in the care, are some of the strategies that I can think of.

Dr. Nicole Rochester:

Thank you, Dr. Seetharamu. And certainly with this being in Empowering Providers to Empower Patients, we love that you included that, having the patients as partners. Do you have anything you’d like to add, Dr. Sandy…do you have anything you’d like to add, Ms. Sandy?

Beth Sandy:

You know, I think looking ahead for clinical trials, new drugs, it’s been really hard in small cell. We don’t have nearly the advances that we’ve seen in non-small cell lung cancer as far as any targeted therapies. Dr. Seetharamu talked about this earlier is that maybe we could figure out some of these different subgroups by looking at their pathology and seeing if some of them may respond differently to certain agents. I’m hopeful about some new drugs that are coming down in the pipeline.

There is an anti-TIGIT agent combined with immunotherapy that looks hopeful, that could produce some good outcomes. Combining immunotherapy drugs, combining them with chemotherapy, you know, potentially down the line we’ll see some of these drugs that will get approvals in small cell lung cancer and improve some of our progression-free survivals and hopefully overall survivals. So just continuing to enroll patients on studies. Have studies designed to fit this patient population, which we’ve significantly lacked in the past 30 years in small cell lung cancer.

Dr. Nicole Rochester:

Thank you. Thank you, Ms. Sandy. And you brought up the clinical trials, and so on that same topic, Dr. Seetharamu, do you have anything to add with regard to really improving access to clinical trials for patients with small cell lung cancer.

Dr. Nagashree Seetharamu:

Yeah. I think bringing clinical trials to the communities is perhaps the biggest way to do it. You know, patients with small cell, many can travel, but there are many that cannot.  So it’s important to understand that making it easier for patients to know what trials are available. Right now the options that we have, the websites that we have, it’s hard even for a provider to kind of navigate through it. Making it easier. Advocacy groups, you know, ensuring that patients are tied to advocacy groups, because they get a lot of information from these groups. It’s important. And I encourage patients to join these groups, because it empowers them and kind of unifies their voice.

There are clinical trials that are looking at doing labs at home or in their local centers, so they don’t have to travel all the way to the main center to get the labs done. That can be a huge help for patients. And again, making sure that clinical trials, when they’re designed, they are adaptable to real world, you know. And Ms. Sandy brought this up before, we don’t want trials that only address the cream of the…you know, like just a small proportion of patients. It should be really viable for the larger community. Yeah. I mean, these are some…I am sure there are many other things that can be done, but I think this would be a good start.

Dr. Nicole Rochester:

As we move to our final topic, I’m going to go to you, Ms. Sandy. We’re going to talk about outdated clinical approaches. How can interdisciplinary care teams and integrated care models be optimized to better address the specific needs and gaps in the management of patients? And what are some successful examples of these models in practice?

Beth Sandy:

So when I think of outdated clinical approaches, I think of things like older chemotherapy regimens or ways that we used to manage toxicity that have changed. So, for example, when I started doing this 20 to 25 years ago, we had two drugs, and that was it. There was nothing else really, and you could throw some other chemotherapies, but, you know, really now we have approved agents that have improved survival, so we need to make sure we’re using the right thing. And then I think the other flip side of that is our ability to manage toxicity. Again, we have much better ways to manage things like nausea, things like neutropenia, even fatigue.  We have better ways of predicting and managing these things now than what we used to have.  So we need to make sure that our supportive care is also maximized so that the patients can stay on treatment, because small cell lung cancer is one of the diseases where treatment is really important, that they’re getting as much of the chemotherapy as possible and on time.

Whereas in non-small cell lung cancer, I may be a little bit more, you know, okay with them taking a trip or being delayed or things. But because this is such a chemo-sensitive disease, it’s really important for us, if they want to be aggressive, to make sure that we are maximizing our toxicity management. Otherwise, they’re not going to be able to get these treatments.  And that’s gonna definitely worsen their outcomes. I think also is discussing goals of care with patients. And I think there’s been a big push in the past 10 years with the early palliative care integration into our lung cancer practices. This is another thing that’s really important here, that we are having real conversations with our patients about the goals of their care. With extensive stage small cell lung cancer, our average survivals are a year or two even with treatment.

So, you know, I don’t need to say to a patient on the first visit, like, you know, this is the exact numbers, because I don’t want patients to perseverate over, you know, exact numbers. But I also think it’s important to say, you know, this is something that we can’t cure, and we’re going to try to manage it as long as possible, but it’s an aggressive disease.  So, you know, what are your…what’s important to you? What are the goals that you would like to see? And that would give an open-ended question for patients to say, well, I’d like to be alive in 10 years for this. And when they say something like that, that might be an opportunity to say, well, I hope that that can happen, but I’m really worried with what we know about this disease, that that might not be, you know, realistic. So what do you think in the short term your goals are?

And that may be an open-ended question too, where they might say, you know, I don’t want to be sick or in the hospital. That’s really important that I’m at home, or that I can do this or that. So this is a disease where we’ve been really well-trained just in the past five to 10 years about how to have these discussions with patients that I would say 20 years ago when I started, we weren’t, I don’t think personally I was as good at having these conversations, and I don’t think we were as well-trained in the profession at this. And we found that this has been extremely helpful for a good patient-provider relationship as well as patient-centered care when they’re making decisions along with us.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And certainly as we talk about how to empower our patients, that shared decision-making that you talked about and incorporating goals of care is incredibly important. Dr. Seetharamu, do you have anything to add with regard to shared clinical decision-making or any other advances or things that address outdated treatment?

Dr. Nagashree Seetharamu:

Yeah, I can’t emphasize how important it is to have the goals of care discussion, but I think, you know, even though the treatment regimen has not changed for first-line much, there have been some nuances to it, right?  We are routinely including immunotherapy in first line. We now have some supportive care. Trilaciclib (Cosela) is something that we use for patients to help support and prevent admissions. These are things that may not be done, and there are some insurance barriers. Trust me, we are on the phone a lot of times that we shouldn’t be, you know, trying to get something approved despite clear benefit and FDA approvals. So, yeah, that’s a barrier that I should have spoken about, probably number one.

But that aside, I think, you know, that’s one thing that we see that is done a little differently in the community. I spoke about tarlatamab-dlle (Imdelltra). You know, many people just jump to different treatments because they just feel like it’s not…they’re not able to offer these newer treatments because of inpatient monitoring, what have you. So they may just start from a Platinum-etoposide to giving them, again, the same regimen or jumping to, you know, topotecan (Hycamtin), which we know that, you know, can…there can be better regimens than that. There are some newer agents that people may not…I’ve seen that in underutilization of some of the newer. We don’t have a lot of approvals in this space, but even the ones that have been approved, there’s relative underutilization of it. So I think education of providers in the community setting is helpful.

Dr. Nicole Rochester:

Thank you so much. Well, it’s time to wrap up our roundtable. I have learned a lot. I’ve really enjoyed this conversation with the two of you. And so now it’s time for closing thoughts. So I’ll go to you, Ms. Sandy, what would you like to be your takeaway message? What’s one of the most important things for our audience?

Beth Sandy:

I think one of the most important things is don’t write off your patients with small cell lung cancer. You know, it’s an aggressive disease. It can be hard to manage. They have a lot of comorbid conditions, but some of these treatments can work well, especially the newer agents. And so, you know, really working with your patient to keep them on therapy, but while at the same time understanding what their goals of care are and continuing that discussion throughout your patient-provider journey, and continuing to understand what their support systems are, what is important to them, and then that will help you and the patient make these treatment decisions along the way.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And what about you, Dr. Seetharamu, what are your closing thoughts?

Dr. Nagashree Seetharamu:

Yeah, I agree with Ms. Sandy on everything that she said. I think emphasizing the importance of multifaceted approach to overcome practice barriers, from reducing stigma and improving access to diverse patient populations, improving clinical trial inclusivity, and closing healthcare disparities perhaps are top strategies. And then, you know, for future, it’s just a call to action, you know, for improving funding for clinical trials and to also, you know, try to see if there are programs that can mitigate disparities that we see.

And then we spoke about stratifying patients, you know, making it a more personalized care, just as we do for non-small cell lung cancer these days with all the novel information that we have so far, and making sure that every patient, no matter where they are, who they are, receive optimal care that they should.

Dr. Nicole Rochester:

Well, thank you both again, Dr. Seetharamu, Ms. Sandy, thank you for this incredibly informative conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. I’m Dr. Nicole Rochester. Thanks for watching.


Share Your Feedback

MPN Care Barriers | Gaps in Patient-Centered Care

What are MPN care barriers and solutions? Experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss common obstacles MPN patients encounter in patient-centered care, how varied factors play a role in care, and methods and approaches to support patients in empowered care.

Download Resource Guide

See More from EPEP MPNs

Related Resources:

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

What Are Key Challenges and Potential Solutions In MPN Management?

What Are Key Challenges and Potential Solutions In MPN Management?

Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care

Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care


Transcript:

Dr. Nicole Rochester:

So I’d like to start off by talking about identifying and overcoming barriers to patient-centered care for patients and families facing a myeloproliferative neoplasm. So, Dr. Jain, I’m going to start with you. What are the most common barriers to implementing patient-centered care in the management of myeloproliferative neoplasms?

Dr. Akriti Jain:

Thank you for that question, Dr. Rochester. It’s very pertinent. As you can imagine, there can be a lot of barriers when we are trying to provide patient-centered care, especially in the management of myeloproliferative neoplasms. As you said, there are multiple myeloproliferative neoplasms, and each one of them is complex. And hence the complexity of each diagnosis, how they’re diagnosed, how their risk-stratified, and how those patients are symptomatic based on whether their platelets are high or their hemoglobin is high, or they have scarring or fibrosis in their bone marrow.

Then that in itself becomes complex and can become a problem when we’re seeing these patients in the community. That’s why a lot of these patients get referrals to tertiary care centers, and not all patients can have that opportunity to go to tertiary care centers and see providers that are very knowledgeable and know what…exactly how to diagnose these myeloproliferative neoplasms.

A lot of times it’s very team-based approach. It’s not just the clinician, but also the pathologist. So a lot of times when these patients come to us we have their bone marrow biopsies reviewed because the diagnostic criteria requires certain things in their bone marrow that helps us diagnose these problems. So not just that these MPN are variable, but also individual variability within the MPNs. So not every polycythemia vera patient presents the same way. So that becomes a problem again when providing patient-centered care, because it’s not the one-size-fits-all philosophy. Those are some of the things that I can think of.

Dr. Nicole Rochester:

Ms. Smith, I know that you share Dr. Jain’s passion with regard to really being compassionate with your patients. So I’d love to get your perspective as a nurse practitioner what are the primary barriers that you’ve witnessed to accessing effective patient-centered care?

Kim Smith:

I would say what I’ve experienced most is the patients actually understanding their disease process, the education piece, like making sure that educating them about their disease, giving them security that, hey, that you have a myeloproliferative neoplasm, but let’s look at it as we’re running a marathon, not a sprint. You know that we have time, you know that we can get family involved. And I think that’s a big thing with me, just try to bridge that barrier that it’s a team effort. It’s not just you. Even though treatment is individualized, it’s still a team. We are a team, so I want you to be comfortable, but I also want to be comfortable with giving you the information and that you are able to receive it. That’s one of the big barriers that I see is them being able to accept their diagnosis.

Dr. Nicole Rochester:

Wonderful. Thank you so much Ms. Smith. So, Dr. Jain, I’m going to go back to you and staying on this theme of patient-centered care. Can you talk about some of the gaps in research regarding patient-centered care in MPNs, and how can those gaps be addressed?

Dr. Akriti Jain:

Sure. So building off of what Ms. Smith was just saying, education comes, it’s very important also for research. If our patients are educated on the potential options for trials, for retrospective research, for registry research, they are more open to accepting these options for their management, for their treatment. A lot of patients might not know which phase each trial is in, and a lot of patients don’t want to be, “guinea pigs.” So sometimes it’s important for us to educate patients that some of these trials are Phase III trials, and Phase III trials eventually lead to drug approval.

So a lot of the drugs we have for myeloproliferative neoplasms were not available a few years ago. So education is very important here. And lack of education within patients and then also within healthcare providers can be a big gap in getting research to the patients where it is needed. And we’re very thankful to these patients that help us advance research and help us get these drug approvals and enroll in trials. Other important gaps are including patient-reported outcomes. As we all might know within MPNs, we have a really nice MPN symptoms core MPN-SAF, a lot of newer research trials, and other research avenues are including SAFs within the trials. And so these are important things that can help us give patients the prioritized and individualized care they need.

Dr. Nicole Rochester:

Thank you so much, Dr. Jain. Ms. Smith, do you have anything to add with regard to gaps in research regarding patient-centered MPN care?

Kim Smith:

Yes. I agree with Dr. Jain, but also another thing that I notice, with these gaps is a lot of patients come to us with other comorbidities, and so they might not qualify for trials or they might have another associated heme malignancy that they might not be able to qualify. So it kind of puts a gap in treatment, because then we have to go with what’s already FDA-approved, and that might not be the best option for the patient at that time.


Share Your Feedback

 

HCP Roundtable: Advancing Practice and Enhancing Myeloproliferative Neoplasm Care

In this EPEP program, Dr. Akriti Jain of Cleveland Clinic and Nurse Practitioner Kimberly Smith of Duke Health discuss overcoming practice barriers, navigating emerging challenges, and implementing strategies to close gaps in patient-centered myeloproliferative neoplasm (MPN) care.

Download Resource Guide

See More from EPEP MPNs

Related Resources:

Expert Insights on Overcoming Barriers to Myelofibrosis Care

Expert Insights on Overcoming Barriers to Myelofibrosis Care

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:

Welcome to this Empowering Providers to Empower Patients or EPEP Program. My name is 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 advancing practice and enhancing myeloproliferative neoplasm care. How can we overcome current challenges to enhance the management and outcomes of myelofibrosis, polycythemia vera, and essential thrombocythemia? What innovative practices are transforming the management of myeloproliferative neoplasms to improve patient outcomes?

Our conversation will look at  gaps in the field and solutions to enhance patient-centric MPN care for improved patient outcomes. We’re going to discuss identifying practice barriers to patient-centered care, navigating emerging challenges and opportunities in management and effective strategies for closing gaps in MPN care. It is my privilege to be joined by Ms. Kimberly Smith of Duke Health. Ms. Smith is a nurse practitioner who provides security and compassion that patients and families need when they get a cancer diagnosis. Thank you so much for joining this EPEP program today, Ms. Smith.

Kim Smith:

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

Dr. Nicole Rochester:

It is also my honor to be joined by Dr. Akriti Jain, a hematologist at Cleveland Clinic. Dr. Jain’s passion lies in understanding the needs of every patient and always prioritizing and advocating for her patients and their families. Thank you so much for joining the EPEP program, Dr. Jain.

Dr. Akriti Jain:

Thank you, Dr. Rochester. Happy to be here.

Dr. Nicole Rochester:

So I’d like to start off by talking about identifying and overcoming barriers to patient-centered care for patients and families facing a myeloproliferative neoplasm. So, Dr. Jain, I’m going to start with you. What are the most common barriers to implementing patient-centered care in the management of myeloproliferative neoplasms?

Dr. Akriti Jain:

Thank you for that question, Dr. Rochester. It’s very pertinent. As you can imagine, there can be a lot of barriers when we are trying to provide patient-centered care, especially in the management of myeloproliferative neoplasms. As you said, there are multiple myeloproliferative neoplasms, and each one of them is complex. And hence the complexity of each diagnosis, how they’re diagnosed, how their risk-stratified and how those patients are symptomatic based on whether their platelets are high or their hemoglobin is high, or they have scarring or fibrosis in their bone marrow.

Then that in itself becomes complex and can become a problem when we’re seeing these patients in the community. That’s why a lot of these patients get referrals to tertiary care centers, and not all patients can have that opportunity to go to tertiary care centers and see providers that are very knowledgeable and know what…exactly how to diagnose these myeloproliferative neoplasms.

Dr. Akriti Jain:

A lot of times it’s very team-based approach. It’s not just the clinician, but also the pathologist. So a lot of times when these patients come to us we have their bone marrow biopsies reviewed because the diagnostic criteria requires certain things in their bone marrow that helps us diagnose these problems. So not just that these MPN are variable, but also individual variability within the MPNs. So not every polycythemia vera patient presents the same way. So that becomes a problem again when providing patient-centered care, because it’s not the one-size-fits-all philosophy. Those are some of the things that I can think of.

Dr. Nicole Rochester:

Ms. Smith, I know that you share Dr. Jain’s passion with regard to really being compassionate with your patients. So I’d love to get your perspective as a nurse practitioner what are the primary barriers that you’ve witnessed to accessing effective patient-centered care?

Kimberly Smith:

I would say what I’ve experienced most is the patients actually understanding their disease process, the education piece, like making sure that educating them about their disease, giving them security that, hey, that you have a myeloproliferative neoplasm, but let’s look at it as we’re running a marathon, not a sprint. You know that we have time, you know that we can get family involved. And I think that’s a big thing with me, just try to bridge that barrier that it’s a team effort. It’s not just you. Even though treatment is individualized, it’s still a team. We are a team, so I want you to be comfortable, but I also want to be comfortable with giving you the information and that you are able to receive it. That’s one of the big barriers that I see is them being able to accept their diagnosis.

Dr. Nicole Rochester: 

Wonderful. Thank you so much Ms. Smith. So, Dr. Jain, I’m going to go back to you and staying on this theme of patient-centered care. Can you talk about some of the gaps in research regarding patient-centered care in MPNs, and how can those gaps be addressed?

Dr. Akriti Jain:

Sure. So building off of what Ms. Smith was just saying, education comes, it’s very important also for research. If our patients are educated on the potential options for trials, for retrospective research, for registry research, they are more open to accepting these options for their management, for their treatment. A lot of patients might not know which phase each trial is in, and a lot of patients don’t want to be, “guinea pigs.”

So sometimes it’s important for us to educate patients that some of these trials are Phase III trials and Phase III trials eventually lead to drug approval. So a lot of the drugs we have for myeloproliferative neoplasms were not available a few years ago. So education is very important here. And lack of education within patients and then also within healthcare providers can be a big gap in getting research to the patients where it is needed.

And we’re very thankful to these patients that help us advance research and help us get these drug approvals and enroll in trials. Other important gaps are including patient-reported outcomes. As we all might know within MPNs, we have a really nice MPN symptoms score MPN-SAF, a lot of newer research trials and other research avenues are including SAFs within the trials. And so these are important things that can help us give patients the prioritized and individualized care they need.

Dr. Nicole Rochester:

Thank you so much, Dr. Jain. Ms. Smith, do you have anything to add with regard to gaps in research regarding patient-centered MPN care?

Kimberly Smith:

Yes. I agree with Dr. Jain, but also another thing that I notice, with these gaps is a lot of patients come to us with other comorbidities, and so they might not qualify for trials or they might have another associated heme malignancy that they might not be able to qualify. So it kind of puts a gap in treatment, because then we have to go with what’s already FDA-approved, and that might not be the best option for the patient at that time.

Dr. Nicole Rochester: Thank you for pointing that out. So we’ve been talking about the barriers that patients face, and I want to shift gears a little bit and focus on the healthcare provider. So, Dr. Jain, I’m going to start with you. Can you speak to some of the obstacles or barriers that healthcare providers face when treating MPN patients?

Dr. Akriti Jain:

Sure. So being a healthcare provider and doing this, I can tell you all about the barriers we face. I think going back to that team-based care, sometimes it’s easier said than done. Like I said, we need pathology input. A lot of times we need psychology input. Other times, we need cardiology input. Some of these patients are getting blood clots, vascular medicine, so team-based care and coordination within those various physicians and nurse practitioners and social workers that can sometimes become cumbersome requires lots of phone calls.

And so in a lot of places, we try to put together these teams where you have kind of like a go-to person to call when you have questions or concerns. The other thing we always are all short on is time. So it’s easier to talk about these MPN symptom scores, but when there are 10 questions to ask these patients within those 15 to 30 minute appointments though that’s another barrier sometimes that we face as physicians and as healthcare providers.

The other important, one of the other important parts is management of some of the side effects of these newer therapies. Every patient reacts differently. Every patient has different side effects that they can have. And knowing those and being able to manage them while keeping them on these therapies, which don’t only improve symptoms, but can also sometimes improve survival and improve the natural history of the disease can be difficult to overcome and handle.

Dr. Nicole Rochester:

Thank you, Dr. Jain. And what about you, Ms. Smith? Can you speak to any additional barriers that healthcare providers face?

Kimberly Smith:

Unlike Dr. Jain was saying, but one of the barriers that I see that that we face a lot is advocacy groups are great, they’re wonderful, we need them. But a lot of patients look at those groups, and they lump themselves into that group. And so I try to tell patients you are an individual. You are individual. You need individualized care. It’s wonderful to look at the advocacy groups. It’s wonderful to follow, and you get some good information, but we also have to look at you as who you are and what we are treating and your symptoms, because your symptoms may not be the symptoms that they have.

Dr. Nicole Rochester:

A really good point. And since we’ve talked about these barriers, I’d love to wrap this part of the conversation up by giving solutions. So, Dr. Jain, you mentioned a couple, you talked about having this one number for all of the how healthcare providers to call, if there are questions to kind of help to coordinate care. Are there other solutions that you or Ms. Smith can offer to start to overcome some of these barriers in care?

Dr. Akriti Jain:

Sure, yeah. In addition to the multidisciplinary team that we were discussing and having, those people that we can talk to another barrier that I didn’t talk about is a lot of prior auths and having pharmacy support to get some of these medicines that can be really expensive, right? The financial toxicity that can come with some of the medicines that we manage myeloproliferative neoplasms with is hard. So having pharmacy support is again very important.

Having that specialty pharmacy that can help us navigate how to get these medicines to patients quickly and get them in an affordable manner, I think another important part that we always come back to is education. Education of those pharmacists, of patients, of other healthcare providers helping them stay on top of what new drug approvals come through, what Phase III trials are available in the community, what the side effects of these medicines are so that they are empowered to be able to help their patients out in the community and also in tertiary care centers.

Dr. Nicole Rochester:

Wonderful. Thank you both. Well, we’re going to move on. And in this section I want to talk about some of the challenges and opportunities. So I’m going to start with you on this one. Ms. Smith, can you speak to some of the emerging challenges and opportunities in the management of myeloproliferative neoplasms?

Kimberly Smith:

Well, a lot of the world of MPNs is starting to explode, especially with myelofibrosis. We are getting all these different treatments, these trials running, things hopefully that we will have that could that could change the disease process in these patients. And one of the biggest challenges is, is that where do the patients fit at in this aspect of it? Are we going to be able to actually get patients approved for some of these things or will we have to go with the oldie, but goodie with a lot of these? We still use hydroxyurea (Hydrea) a lot in these MPNs. And so, but we have a lot of other drugs now that we can use.

But because we know that it’s tried and true, and it’s harder to get patients on some of these other drugs, we go with the oldie but goodie. So I think that’s a challenge that we…that we’ll have. And the other thing is too these drugs are expensive. So even if we can get the drug form at our institution or in the community, if we can get them for them, will they be able to afford them? And one thing I can say that I’ve noticed is a lot of the drug companies that we’ve dealt with here that they are really good about helping, is there anything that we can do to kind of help push the process to get patients assistance for these therapies? And so I think that’s one of the biggest challenges that we’ll have with treating them, just this explosion of new therapies coming.

Dr. Nicole Rochester:

And you kind of alluded to it when you spoke about hydroxyurea. So I’m going to pose this question to you, Dr. Jain, are there any unforeseen or outdated practice-related barriers or therapeutic inertia that may hinder your work in that of your colleagues?

Dr. Akriti Jain:

Yes, definitely. I echo Ms. Smith’s sentiments. I think a lot of times, things that we have already used for years and having familiarity with those treatments sometimes can lead to resistance to accepting new guidelines and treatments. And that can come from, again, not knowing the side effects that these treatments can pose, right? Not having long-term data that these drugs haven’t been, some of them are new, they haven’t been around for years, so we don’t know what they can cause in the future. And that can happen both from the healthcare provider standpoint and also from the patient standpoint. And it can be challenging. And what can help us overcome that is education.

Even though the drugs might not be approved, for example, the newest approval that came around last year was momelotinib (Ojjaara), which is a newer drug for myelofibrosis, can help treat anemia as well. After it was approved, we had patients ask us for that drug for months before we could actually prescribe it. Yes, because FDA approval and then actually being able to prescribe the drug take…it takes some time for these drugs to show up on formularies for pharmacies to start carrying them. And then going back to, even if the drug was approved last year, it doesn’t mean it’s a new drug. It’s being tested and it is being tested in trials for years now. So those are some of the things that I can think of.

Dr. Nicole Rochester:

Thank you both. So I want to talk about the Landmark study. This, as you all know, was a large scale analysis and survey of patients with myeloproliferative neoplasms as well as the healthcare providers who treat these rare chronic blood cancers. Ms. Smith, how do you feel that healthcare professionals can use the insights from the MPN Landmark study as an opportunity to improve how they communicate and interact with their patients?

Dr. Akriti Jain:

Sure, I think the most important thing that we can learn is understanding the patient perspectives and needs. It provides an in-depth analysis of what the patients get anxious about or what the patient’s symptoms are about. So if, for example, if the patients are anxious about side effects of treatment, we can be proactive in empowering our patients with that knowledge that these are the things that we need to look out for.

These are the things that you would call us for. And again, it gets us back to understanding the common challenges that our MPN patients face and then how we can help them with those challenges, those symptom management. If treatment adherence is a problem, how can we help them have a pill diary? Or if a burden is a problem, how can we help them reduce some of the medicines that they’re taking? I think it provided a really good understanding of what patients feel, how their perspectives are, and what things we can use to improve their management and provide more patient-centered care.

Dr. Nicole Rochester:

And what about you, Ms. Smith? What are your main takeaways from the Landmark study and how can healthcare providers use those results to improve the way they interact with patients?

Kimberly Smith:

My main takeaway was where the patients, where it showed on the study, where the patients were saying it was hard for them to get up out of the bed. So I’ve dealt with that with many patients. Fatigue is a true issue. And, I’ve had patients tell me they’ve golfed nine holes. I had no idea what that meant. But then they say I come in and I can only golf five holes.

I still had no idea what that meant. However, it was significant for them. And so, what I take from that study is we have to not only just ask patients, what are your symptoms? We have to actually question and dig to actually find out because what we may be looking at just off of the symptom score page, they may have something else that’s hindering their ADLs or hindering their, what they’ve done all the time in their life. And it’s changed now.

And so, I think the main thing we have to do is actually ask, educate, have them to write down symptoms, anything that happens new that happens to them, let’s write it down. Let’s go over it. Let’s talk about it. And then if it’s fatigue, we have ways we can help mitigate some of that. We collaborate with palliative care to help with symptom management. If it’s allergy symptoms, we collaborate with allergy. So there’s ways we can help you with your symptoms, but if we don’t know, we don’t know. So I think the education, I think talking to patients, like actually talking to them on their level is what that Landmark study kind of presented to all of us, healthcare providers, that what we may be looking at as symptoms may not be symptoms for the patient.

Dr. Nicole Rochester:

Absolutely. And that kind of circles back to, I think what you were talking about earlier, Dr. Jain, with regard to patient-reported outcomes. So I will say I was thrilled to see this study, and I wish that this is something that was done in all disease states. So thank you both for commenting on that. So in our final topic, we’re going to talk about strategies for closing the gaps in myeloproliferative neoplasm care. So I’m going to go to you first, Dr. Jain, can you describe the most effective strategies, including your own best practices that can address gaps in care for patients facing a myeloproliferative neoplasm?

Dr. Akriti Jain:

Yes. So again, coming back to empowering our patient and leading to that shared medical decision-making. So different patients present differently, not using that one-size-fits-all philosophy, depending on what their symptoms are, what their diagnosis is tailoring their treatment. If cytopenias or anemia is a problem, helping them battle that. And different hemoglobins can be different for different patients. So not discounting their symptoms, saying that your hemoglobin is 11, your hemoglobin’s fine, you don’t need any treatment for this right now, maybe they’re used to functioning at a 14.

So shared medical decision-making is very important, because if patients feel like they’re heard, if patients feel like they’re a part of the decision that their healthcare provider made in helping them decide what is best for them, I think that is really important. And it would lead to patients actually adhering to treatment, following up with their healthcare provider, and also better physician-patient relationship, which I think is very important in some of these chronic diseases, where these relationships last for years, right? This is one of the chronic diseases, like a lot of times we’re telling our patients, this is like high blood pressure or diabetes, we have to learn to live with it.

And so they have to be friends with their healthcare provider, otherwise they’re not going to come see you again. So I think empowering the patient, making them a part of this decision of how we’re going to treat them, how we’re going to monitor them, how often should we be doing their labs, is it feasible for them, I think are really important ways to close those gaps and help our patients.

Dr. Nicole Rochester:

Thank you so much, Dr. Jain. What about you, Ms. Smith, what thoughts do you have in terms of strategies to address the gaps in care for MPN patients?

Kimberly Smith:

I agree with Dr. Jain, but also bridging the gap between community and tertiary centers. A lot of times, we treat patients in these big centers, and then we send them out to local places to whether they need transfusions or, or to continue care because the distance for them to make it here is just too far. So I think, bridging, collaborating with the outside community hospitals and community centers, and also even the nursing staff, the nursing staff coordinating, just coordinating the care so these patients will know that they are receiving effective care, whether they are at this tertiary center or they’re at their community center, because we all are working as a team to make sure they have everything they need.

And also including the family. Families are important. That was a big thing to me. Like, I want to make sure families knew that they were a part of this team also, because a lot of times it’s the family who is having to deal with the symptom management. They’re the ones who want their family member to go somewhere with them, and they’re just too fatigued to get out, and they don’t understand it, because we’re telling them that this is a chronic disease. They should be able to do some things, but they just can’t. So I think we have to make sure we’re bridging the gap with the families also.

Dr. Nicole Rochester:

So for you, Dr. Jain, are there specific strategies or maybe one strategy that you have implemented yourself, maybe where you work, that has helped to bridge that gap between tertiary care and the community setting, as an example?

Dr. Akriti Jain:

Yeah, that’s a very good point brought up by Ms. Smith. So what I do, because a lot of the patients I see in my clinical practice are second opinions. A lot of these patients I see one time, and maybe I’ll never see them again, or maybe I’ll see them in two years from now when things have changed, and they have more questions, or their provider has more questions. So what I do is I make sure the patient has my contact number so that they can always reach out if things change.

I make sure they have that MyChart set up so that they can always message me if they need me. The next step that I always take is I call their primary oncologist. I make sure they have my cell phone number so that they can call me if things change, if they have any questions. And the third thing I always tell my patients is you can use me however you want to use me.

So, I, a lot of times, would set up virtual visits in three months or in six months. That way, even if they live hours away from us, they can see us the tertiary care center through the comfort of their home. They can get labs locally and see us. They can kind of alternate between their primary oncologist and a tertiary care center, or maybe see us once a year. It’s dependent on how much they feel makes them comfortable seeing us along with their primary oncologist who’s doing most of the heavy lifting, providing the care close to their homes.

Dr. Nicole Rochester:

And to circle back to the family part, I’m going to go back to you, Ms. Smith. Is there a strategy that you can share that you and your team implement to really engage with the family members of MPN patients?

Kimberly Smith:

Yes. So we provide educational materials to the patients. We always ask them to bring a family member with them. If they can’t bring a family member with them, I’m willing to call a family member if they need information after the visit. I always give them the contact numbers that the family member can contact me also. MyChart is a big thing. Make sure they have MyChart because the family reaches out via MyChart also.

Another thing that I do is that I try to make sure that the family also has like the educational material too, because sometimes you can give it to the patient, but they don’t share it. So if a family member comes, if I pass out information to the patient, I pass it out to the family member also. I also provide them with websites that they can use, that they can utilize. Like the Cleveland Clinic is one of them that I have them use a lot, but, but websites that they can use where they can actually look up information on these different MPNs that they may have. So I think the educational piece is the biggest thing that I do with my patients.

Dr. Nicole Rochester:

Excellent. Thank you both for that. We talked a little bit about the perception that patients have when we talked about the Landmark study a little earlier in this program. And Dr. Jain, I’m going to come to you. How did the gaps in perception or perhaps the disconnects between the patient perception and the physician or healthcare provider perception of the disease burden, how do those gaps impact overall management and treatment outcomes for MPN patients?

Dr. Akriti Jain:

Sure, Dr. Rochester. So the disconnect between the physician and patient can become really important and where that occurs is because a lot of times our low symptom burden, low-risk disease patients are being observed. And the physician might think that I don’t think this patient warrants treatment, but the perception that the patient has of their symptoms might actually be very different. And I think what comes really handy here again is that MPN symptoms score, when you ask patients to rate the symptoms from 0 to 10, but 10 being the worst, you can actually see where they lie on the spectrum.

And I do these symptoms scores on every visit, because especially if I’m starting them on treatment, it really helps to know in an objective manner that what was the number that our patient rated fatigue on at their last appointment and what that number is now. And it’s not just fatigue, but all those 10 points and then symptom score, how are their night sweats, how is their itching, are they still having problems concentrating, have they lost weight?

So all these questions with a number attached to them, and it’s very surprising. You’ll see patients put in a zero for all these numbers and suddenly after three months, those numbers change. And so that really helps to know where the patient lies and so that we can close the gap between what the patient is perceiving about their symptoms versus what their provider is.

Dr. Nicole Rochester:

Ms. Smith, what would you like to add?

Kimberly Smith:

Yeah, I agree with that. I agree with that because using that symptom score, one of the questions is early satiety and losing weight. And that’s a big thing for these patients because they can end up with spleen enlargement. And so one of the main things that I kind of hone in on is, I want you to chart your symptoms. I don’t care what it is, Chart your symptoms. Even if it seems small to you, chart it. Because once you start them on drug, these things can change. And I just speak from one, just remembering one patient that I had who had an enlarged spleen and her main thing was, I want to eat. I just want to eat a burger and a full burger. And I haven’t been able to do that.

And we started her on treatment. And within three months, her main thing was, Kim, I was able to eat a burger and I ate the whole thing. So even though we probably can’t see on scans that it’s smaller, she could tell something was different. And that just made her happy to be able to do that. And so I tell them to chart everything. It doesn’t matter what it is, how mediocre you may think it is or minuscule you may think it is. It’s important because if things change over time, we need to be able to manage it.

Dr. Nicole Rochester:

Absolutely. Thank you. Well, this has been awesome. I have learned a lot as always. It is time to wrap up our roundtable. And I’d like to get closing thoughts from each of you. So, Dr. Jain, what is the most important takeaway message you want to leave with the healthcare professionals who will be listening to this program?

Dr. Akriti Jain:

Yeah, thank you, Dr. Rochester. I thoroughly enjoyed our conversation as well. I think the most important part of all of this is empower your patients. Tell them what they are suffering from. Tell them this is a chronic disease. Tell them you’re there for them. Use the resources we have the MPN symptom score. Use the medications we have if the patients meet those criteria, if they’re having symptoms. Sometimes it’s important to get down to the patient’s level and get to the point where they or get down to the patient’s level and feel what they’re feeling, rate their fatigue, and give them the help they need.

Dr. Nicole Rochester: 

Thank you, Dr. Jain. And Ms. Smith, what is the most important takeaway message that you would like to leave with our healthcare professional audience?

Kimberly Smith:

Thank you. I truly appreciated this and I loved it. This was awesome. But I just want to leave that, listen to your patients. They know their bodies. They know themselves. Listen to their family. They’ve dealt with them all their lives. They know when something is different. So just listen to them. Listen to them. Be receptive. And that way we can work as a team to make sure our patients get the best care that they need.

Dr. Nicole Rochester:

Well, thank you both. Just to echo what Dr. Jain and Ms. Smith have said, the most important takeaways are really involving our patients and their families, empowering our patients and families, educating our patients and families, and also valuing this multidisciplinary, interdisciplinary team. So thank you both so much again for being here and being part of this important conversation. And thanks to all of you for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. Again, I’m Dr. Nicole Rochester. Thank you for watching.


Share Your Feedback

 

Peer Insights | The Power of Patient-Centered Care

What’s important to know about patient-centered care? PEN’s Aïcha Diallo discusses key aspects and benefits of patient-centered care, the impact of patients engaging in shared decision-making, and treatment adherence in relation to cultural factors. 

See More from EPEP CLL

Related Resources:

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Transcript:

Dr. Nicole Rochester:

Every one of us wants to receive care that addresses our individual needs. It seems like a given, but unfortunately, this is not the same story for everyone. I’m fortunate to be joined today by Patient Empowerment Network’s Vice President of Programs, Aicha Diallo, to discuss this important topic. Aïcha, what are the key aspects of patient-centered care? And why is this an important area for providers to focus on?

Aïcha Diallo:

The key aspects of patient-centered care include respecting your patients’ preferences, hearing them out, and really understanding where they’re coming from and what they want. Coordination and integration of care is also very, very important. Providing patients the information and the education that you can provide to them. And if those resources are not available, it’s important to seek the resources and be able to connect them with even additional external resources that they may benefit from.

It’s also providing them the access to care that they need. It’s physical comfort. It’s providing emotional support. It’s that continuity and transition and that involvement of family and friends. It’s making them a part of the patient, a part of them being present, about them making the decision to either engage in a specific treatment option or coming up with the best treatment option for them. And why this is important for healthcare professionals to be aware of is because it allows them to meet their patients and their families exactly where they are and be able to provide them with the equitable care and the services that they need.

Dr. Nicole Rochester:

Thank you so much, Aïcha. Can you speak to the importance of involving patients in decision-making processes at the outset of care?

Aïcha Diallo:

Absolutely. Involving your patient in general and shared decision-making is key. I would say it’s important to be able to speak to your patients and speak with your patients as opposed to speaking at them. It’s about respecting where they’re coming from and what their needs and their wants are. It’s about opening up the door for them to share what their goals are, so they could be involved in their care. It’s about giving them that platform, the autonomy to make their own decisions and to be at the driver’s seat of their care.

Dr. Nicole Rochester:

Thank you. And lastly, Aïcha, we know that cultural factors can sometimes impact treatment adherence. So given PEN’s strong presence in the cancer community, I’d love for you to talk about treatment adherence and its connection to various cultural needs and differences.

Aïcha Diallo:

Adherence is really important. Without shared decision-making I feel that it’s very difficult to obtain as a healthcare professional adherence from your patients. One thing that is important for healthcare professionals to understand is that adherence is an active choice that is made by the patient to follow a daily regimen, whether that is taking their medications or exercising every day or even honoring their doctors’ appointments. And while this may have been a conversation with their patient or even prescribed by the healthcare teams, one thing to keep in mind is that the patient is taking the responsibility for their own well-being and is making those actions, not because they were told, but because they fully understand what needs to be done in order for them to achieve their goals.

And without great communication and without the ability to engage your patients in their care, some patients may feel or may be compliant while they’re not necessarily adherent. So that may create a confusion, but what you really need is both. Some of your patients may not feel entirely comfortable asking you questions that could even benefit them because maybe culturally speaking, they don’t want to question their healthcare professional, they don’t want to question their authority. So they will do as they’re told, but it’s important for patients to be adherent and compliant. It’s important to give them that platform to make them feel comfortable and present in their care, so they could be entirely engaged and empowered.

Dr. Nicole Rochester: 

Absolutely. Thank you so much, Aicha. Another wonderful discussion and thank you for your expertise.

Aïcha Diallo:

Absolutely. Thank you very much.


Share Your Feedback

Peer Insights: Practicing Cultural Humility to Empower Your Patients

Peer Insights: Practicing Cultural Humility to Empower Your Patients from Patient Empowerment Network on Vimeo.

How can healthcare providers practice cultural humility to empower their patients? PEN’s Vice President of Programs Aïcha Diallo discusses barriers healthcare providers may encounter and advice for overcoming or minimizing these barriers to cultural humility.

Related Resources:

Cultural Competence vs. Cultural Humility

Cultural Competence vs. Cultural Humility Infographic

Aicha Diallo

Peer Insights: Understanding Cultural Competence vs. Cultural Humility

Cultural Humility Fostering Respect & Understanding Your Patient's Unique Identity

Cultural Humility: Fostering Respect & Understanding Your Patient’s Unique Identity Infographic

Transcript:

Dr. Nicole Rochester:

Cultural humility has practical implications for improving healthcare outcomes such as improved communication, empowerment, and trust between providers and their patients, and also enhance patient-centered care. But we know that there are barriers that may exist to putting these things into action. Aicha, what are some common challenges that healthcare providers face when trying to practice cultural humility?

Aïcha Diallo:

Some of the things that I’ve been seeing is really not being able to carve out enough time to listen to their patients’ unique traits, unique characteristics, needs, wants, concerns, or even goals. We always encourage our patients and care partners to put all of this on the table and to share this with their healthcare teams. But something that we always hear is that there wasn’t enough time allocated to even go there.

So that is a challenge for someone who wants to practice cultural humility but doesn’t have enough time to be able to do that. I would also add to that, that it’s giving, and I sort of mentioned this earlier, sort of giving enough room for their patients to feel comfortable to engage in shared decision making, for them to feel that they are co-decision makers and it’s the time for them to express what’s going on. And to even add more. 

Another challenge is working in an environment that does not always promote cultural humility. So the healthcare professional might feel alone and feel that they’re practicing this on their own, and there are no other colleagues or no one else with them throughout this. One of the other things I would like to also add as a challenge is not being able to work as a group to identify some of the patient’s barriers that they’re facing and even providing helpful resources that could be meaningful to them.

Dr. Nicole Rochester:

Thank you. You’ve talked about a lot of these barriers that are really outside of the control of the provider. And so that brings me to my next question, which is really about the systems in which we provide care. What is the role of healthcare institutions supporting ongoing learning and environments that actually promote cultural humility so that providers can truly empower their patients?

Aïcha Diallo:

It’s really ensuring that patients and their families can access effective and equitable care regardless of who they are, where they’re from, what they look like, where they live. I think here at Patient Empowerment Network, we have several cultural humility resources for healthcare professionals, which include infographics that are embedded in the EPEP program and other resources that incredibly useful and important to them to access at their fingertips and be able to feel empowered themselves so they can continue to empower their patients.

We have added recently over a 100 languages to our website to make sure that our resources are available to anyone. And one of the last things that I would add as well is we continue to encourage healthcare professionals to share our PEN’s resources because by doing that, not only that the healthcare professional empowers themselves comes ready with information and comes humble with a step back and say, please share more.

But they’re also able to provide those resources and programs to their patients so they can access them so they could also feel empowered. So I would add, please continue to share our PEN’s resources. Make sure you include a lot of the tools and the tips that are useful for your patients regardless of what language they speak or where they live or again, where they’re from. So providing our digital literacy skill programs are also really important, our Digital Sherpa and Digitally Empowered, with your patients and families as it will provide them with some additional insight and a way for them to feel that they do have presence and they sit at the table to engage better with their healthcare teams.

Dr. Nicole Rochester:

Thank you so much. This has been such an enlightening discussion and lots and lots of resources that PEN provides. And thank you for all that you all are doing in this space. Aicha Diallo, vice President of Programs at Patient Empowerment Network, thank you so much for your wisdom and your insight.

Aïcha Diallo:

My absolute pleasure. Thank you so much for having me.


Share Your Feedback

How Can Prostate Cancer Providers Help Empower Patients?

How Can Prostate Cancer Providers Help Empower Patients? from Patient Empowerment Network on Vimeo.

 How can prostate cancer providers help empower patients? Host Dr. Nicole Rochester and Drs. Yaw Nyame, and Petros Grivas share their perspectives on how health providers can work with patients to empower them to make more informed decisions in their treatment journeys toward optimal prostate cancer care.

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care?

How Can I Get the Best Prostate Cancer Care No Matter Where I Live?


Transcript:

Dr. Nicole Rochester: 

I’m going to ask Dr. Nyame to elaborate on which is these fancy tests and these new technologies and things, and what we know is that a lot of times the patient themselves, if they are not aware of these particular tests, then because of all the disparities that we’ve talked about, they may not even be offered to them. And so a question for you, Dr. Nyame, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options and diagnostic options?  

Dr. Nyame: 

You know that’s very challenging because Dr. Grivas and I see this in our clinical practice, we have patients who are very savvy, that’ll come in and say that “I’ve heard that there’s a PSMA in San Francisco. Do you have it in Seattle? If you don’t have it in Seattle, I’m going to go to San Francisco.” And for every patient I had like that, who might be, “Hey, have you read this latest article, I can have someone who has no idea of what’s going on with their diagnosis, and so how we create opportunities to bring those patients and know very little up to somewhere close, maybe not quite to the demanding the PSMA or a fancy scan level, but sophisticated enough to feel empowered in their health decision-making as something where I think we need to do research because we know that certain tools, navigation, advocacy groups can help in that arena, but I think that we need to understand what the tools are that patients want. What’s interesting is when you query patients, which we’ve done in a study and you say, “What are the most pressing issues for you in your prostate cancer diagnosis,” whether it’s in the localized setting or in the advanced or metastatic setting, the one thing that has resonated over and over again, irrespective of race is, “I need help making decisions, I need tools that will make it, me more efficient in how I make my decisions.” And so, I think without punting the answer too much, we need to do better, and I think part of that starts with listening. I do think that providers can be trained to provide that information in a more efficient manner. We do not…we as clinicians, are built into a system where the number of patients we see really correlates with how we get paid, and there’s not a doctor that doesn’t go to work excited to educate and build relationships with patients, that’s not the case, but there is a time crunch and I feel like in situations where there is a bigger gap and knowledge and understanding, we often don’t have enough time and built into our day to have the discussion, so for me, for a lot of my patients who I feel like have a lower understanding of what’s going on with regards to their prostate cancer diagnosis, it’s really important for me to build into our visit the understanding that whatever we don’t cover can be addressed at a later time and that we don’t have to make a decision with that at particular visit. So, when I think about this, it’s sort of like your favorite barbershop or your favorite grocery store, your favorite sandwich place, the relationships matter. 

And I think when we talk about empowering patients to be advocates for themselves in their clinical visits, I think there needs to be an understanding from patients that if it doesn’t feel right, that they have options and to take their time in the decision. Prostate cancer, unlike other diseases, that Dr. Grivas and I treat doesn’t have to have the dial turn to 10 or 11 right away, and we need to make a decision because time is extremely sensitive, even in our most aggressive localized settings, which is what I treat, we have the opportunity to take weeks, if not months, to come to a decision. 

Dr. Nicole Rochester: 

Thank you, thank you so much, I appreciate that. And certainly, as a physician who’s also a health advocate, I strongly agree with what you said about if the relationship is not working, that there are options, and I know that that may not always be the case depending on where patients live, but I regularly encourage my clients to sometimes you have to look somewhere else, sometimes you have to get a second opinion or maybe even fire your doctor if the relationship is not mutually beneficial, so I appreciate you sharing that. Dr. Grivas, do you have anything to add in terms of how patients can take a proactive approach to their healthcare and how they can build this confidence we’ve been talking about and express their concerns to their medical team? 

Dr. Grivas: 

I think Dr. Nyame covered it so well. I think it’s critically important for all of us to recognize that the finding out the why is probably the key to answer those questions, why there is this distrust, why someone is not paying attention so her own health because they have to try to make ends meet and keep family fed during the daytime, and they don’t have time to think about their own health as Dr. Nyame mentioned before, at the same time, empowering the patient that they are the center of this relationship. 

Why doesn’t Dr. Nyame go to the clinic in the morning is because of patients, so our training is patient-centered and our practice is patient-centered and our research is patient-centered, so the patient should feel that right from the door, that this is a service to them. And we’re doing what we’re doing to help their life being longer, longer survival, as we call it, or better, better quality of life, and listening to the patient’s needs is important because of the time crunch that Dr. Nyame mentioned before, I think many of us, probably all of us are within situations where we don’t have enough time to listen advocate-ly, what the person have to say, that’s why I think it’s important to have opportunities for separate visits and utilize better other mechanisms, exact mechanisms, patient navigation I think it’s a critical part of our care, social workers, case managers, financial counselors, nutritionist, genetic counselors, looking at genetics in for the disposition to cancer which is much more common than we think occurrences sometimes we be higher in some certain populations. Having this service available to patients, can help a lot because they will give them knowledge, and knowledge is power by itself, so give them the center, we’re here for them. Why they’re here, it’s because we want to help them and giving them also resources, they need to get now let’s information, when they feel they have more knowledge and they feel that they have control, they can communicate back and give feedback of how we can do better and also, what are the priorities of their needs, so we can address those, what matters to the patient, and this can apply to base and care, and also is what questions we’re asking? Research should be defined by patient priority, so all of those factors should be a dialogue with a patient, I think advocacy groups can be a great liaison to help us disseminate this concept and help again, empowering the patients. I struggle believe that explaining the why and giving knowledge, the data points in a simple and lay manner, can patients think being more in control. 

 Dr. Nicole Rochester: 

I love the patient-centered focus, that is something that admittedly, we’ve gotten away from that to some degree in medicine because of the time crunches that both of you have mentioned, and I love that you said knowledge is power.  

How Can Breast Cancer Patients Connect to Patient-Centered Care?

How Can Breast Cancer Patients Connect to Patient-Centered Care? from Patient Empowerment Network on Vimeo.

What actions can breast cancer patients take to connect to patient-centered care? Dr. Regina Hampton shares insights about breast cancer resources that aid in supporting whole care of the patient.

See More From the Best Care No Matter Where You Live Program


Related Programs:

What Key Questions Should Newly Diagnosed Breast Cancer Patients Ask Providers?


Transcript:

Dr. Nicole Rochester: 

Something that I see in my field is that most patients and family members are operating from obviously a non-medical viewpoint, and sometimes they just don’t even know what questions to ask, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of the treatment options that are available? 

Dr. Regina Hampton: 

So I think the good thing about many breast centers is that they do have what are called navigators, who really sit and hand-hold the patient through the process, and they sit and do one-on-one counseling, they try to find resources to help the patient get through treatment, they hold support groups, they really are a wealth of information and a nice go-between between the patient and the physician or the provider. So trying to find a comprehensive breast center where they have a whole program that’s dedicated to patient-centered care, I think is important. It’s also important that patients be empowered to go online, you can find what questions do I ask? Print it out and bring it to your appointment and ask those questions, and it may take a couple of visits to get those questions answered, but I think it’s important to get the questions answered. If you’re with a provider who is feeling like they don’t have time to answer or they’re blowing you off when you’re answering those questions, guess what? You can fire your doctor and go find another doctor and I don’t think we do that enough. 

I get on my patients and say, “You know what, you all scrutinize when you go buy shoes, when you go buy that cute dress, when you go buy that new car, but we should scrutinize our providers because they’re taking care of our most precious commodity, and that is our body.” 

Dr. Nicole Rochester: 

That is absolutely true. I have fired a couple of doctors in my day, and I recommended that some of my family members fired their doctors as well, so I really appreciate that coming from you, Dr. Hampton. And you touched on a little bit on what I’m going to ask next, and not really staying on this advocacy piece, we’ve talked about the importance of patients feeling empowered, and you shared a really good tip which I love, which is writing your questions down, it’s something that I frequently recommend to my clients and my friends and family members.