Tag Archive for: Empowering Providers to Empower Patients

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

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Why is it important to empower patients? Expert Dr. Akriti Jain from Cleveland Clinic discusses her methods of educating and empowering her patients and how empowerment sets patients on their path to optimal cancer care.
 

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MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

 MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

 Kimberly Smith: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Akriti Jain:

Empowering my patients is very important to me because I want to make sure when a patient leaves my clinic appointment they have a basic understanding of the disease that we’re fighting together. I try to explain to them basic understanding of how a bone marrow functions, where it is present, it’s in their long bones, and then draw them a chicken scratch of what MDS is and what MPN is, what a myeloproliferative neoplasm actually entails, how it is diagnosed, print them out their bone marrow biopsy reports so that they understand where the pathologist is seeing the issues.

And this is, again, very important because if a patient understands what they’re fighting, what we’re fighting together, they’re more likely to pay attention, they’re more likely to be more compliant, they’re more likely to adhere to what you recommend, get those lab tests, come to their visits, take the medications, and call you if they have concerns or questions.

Kimberly Smith: Why Is It Important for You to Empower Patients?

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Why is it important to empower patients? Hematology-oncology nurse practitioner Kimberly Smith from Duke Health shares her approach to moving patients from a place of helplessness to becoming key players in powerful decisions.
 

 

Related Resources:

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

 MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

 Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Transcript:

Kimberly Smith:

I empower my patients by giving them information, education. I try to educate each one of my patients, their family members. It’s very important to me, because I’ve been on that side. And I know how it is to be sitting there and not understanding anything that’s going on and not knowing where do I go from here, how is this treated, how is this person going to be managed, what can I do to help, and feeling helpless.

I want my patients and their families to always feel powerful. I want them to always feel like they are part of this team. Nobody’s just making decisions for them. They have a voice, and it is our job to advocate for them and help them strengthen their voice. That’s why it’s important to me.

Recognizing Implicit Bias and Respecting Patients’ Choices Infographic

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Recognizing Implicit Bias and Respecting Patients’ Choices_EPEP CLL

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Empowering Providers to Enhance CLL Patient Care

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Empowering patients is at the core of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. With this in mind, PEN has taken on a new initiative for chronic lymphocytic leukemia (CLL), the Empowering  CLL Providers to Empower Patients (EPEP) initiative. The program multiplies PEN’s reach to healthcare professionals with the aim to improve physician-patient communication; shared decision-making; and the role that CLL patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.

The EPEP CLL initiative includes the following resources:

  • Needs Assessment outlines key factors that enable patient empowerment, attributes of an empowered patient, and advice for healthcare professionals to perform a needs assessment for each patient.
  • EPEP Roundtables with CLL experts Dr. Jennifer Brown, Dr. Callie Coombs, Dr. Daniel Ermann, and Dr. Andres Chang as they discuss a range of topics including how to help your CLL patients play an active role in managing their care, healthcare provider recommended strategies for managing disease burden, the importance of advanced practice clinicians on the CLL health care team, and ins and outs of clinical trials and communication about clinical trials.
  • EPEP Resources includes the resource guide, infographics, blog, and other resources to improve patient care.
  • EPEP Peer Insights with PEN’s Vice President of Programs Aïcha Diallo breaks down the differences between cultural competence versus cultural humility and barriers that HCPs  may encounter and ways to overcome cultural humility barriers.
  • EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources. PEN delivers a curated PDF according to your interests and delivers it efficiently to your inbox.

Key Takeaways for CLL Patient Care

PEN had the opportunity to interview CLL experts Dr. Jennifer Brown from Dana-Farber Cancer Institute, Dr. Callie Coombs from the University of California, Irvine, Dr. Daniel Ermann from Huntsman Cancer Institute, and Dr. Andres Chang from Emory University School of Medicine to learn about some of their expertise. They shared their views about essential ways that they work with patients to help empower them and to educate them about CLL mutations and side effect management.

A team-based approach is the ideal model for taking optimal care of CLL patients. Dr. Callie Coombs stressed the key roles that pharmacists, oncology nurses, and nurse practitioners play in CLL patient care. “…I think it comes down to your internal resources, but I would say taking care of CLL patients is clearly a team effort. And so it’s not just me, but also a team of additional practitioners that I work with. So I’d like to emphasize how important pharmacists are because I’ve definitely seen some side effects that come about because a patient is now on a medication that interacts with whatever their CLL therapy is, which drives up the levels of the drug and then brings out certain toxicities so they can help us identify these if perhaps I missed it or didn’t ask the patient about a supplement, et cetera.”

The advances in CLL treatment have expanded tremendously over the past several years leading to refined treatments. Expert Dr. Callie Coombs shared her perspective about how patient care has changed. “…CLL is a chronic disease that affects our primarily elderly patients, and so it’s a marathon, not a sprint. However, with all of the advances that we’ve had in excellent drug therapies, despite these resistance mutations, patients can attain many, many, many years of high quality of life. But it’s incumbent upon us as their providers to help ensure that quality of life through effective management of side effects that may be encountered over the course of their time on therapy for the patients that do need therapy.”

Switching treatments can be an effective method for resolving side effects in some patients. Dr. Callie Coombs discussed some changes she’s seen in some of her patients. “…I’ve had patients with chronic long-standing toxicities to ibrutinib (Imbruvica) that perhaps went underrecognized where I say, ‘Hey, I’ve notice your blood pressure has gone up a lot…Let’s switch you over to acalabrutinib,” or other patients, “Oh, you’ve had issues with atrial fibrillation…let’s try switching you to zanubrutinib.’..Because the rates are a lot lower and a lot of patients can have improvement or just complete resolution of the prior side effect. And so I hope that that emphasizes this is something that we think about every day, and switching is appropriate in the setting of intolerance.”

CLL Mutations and Side Effect Management

Although CLL is not defined by any specific mutation, CLL care providers see a large number of different mutations at low percentages. Dr. Jennifer Brown discussed how mutations can come into play with CLL treatment. “So at baseline, the most common mutations, which are somewhere in the 10 to 20 percent range of patients, although less than that if you have very early stage patients, affect the p53 gene, NOTCH1, SF3B1, and ATM. P53 is the most important because that one does influence our thinking about the patients and our choice of therapy in some cases.”

TP53 aberrations are especially vital in relation to chemotherapy. Dr. Callie Coombs explained the impact of these specific mutations. “…when patients have TP53 aberrations, whether that’s 17P or a  TP53 mutation or both, given that they can occur in isolation or together, these patients should never get chemotherapy, because they have extremely terrible responses to chemo, and that should not be part of the therapies offered to these patients.”

Warning CLL patients ahead of time about common treatment side effects is recommended to help prepare them for treatment. Dr. Jennifer Brown explained some common side effects with her patients. “…headaches often happen early on when you initiate acalabrutinib (Calquence) but they go away typically very quickly. And so if patients know that, then they’re much less worried, and then you can talk to them about the strategies, because caffeine or acetaminophen (Tylenol) will often help with that. If you warn them that they may have some joint aches or pains, that can also help, since those are often transient…With venetoclax, warning them about some nausea or diarrhea, and then we often manage that by subsequently moving the drug to the evening after they’re done with their ramp up, or initiating an antiemetic, things like this.”

Dose adjustments to CLL treatment may prove to be a highly effective method of side effect management for some patients. Dr. Daniel Ermann shared his perspective about dose adjustments. “…I think dose reduction can make a big difference in the side effect profiles of these medications. I’ve seen reduced bleeding, for example, reduced rates of atrial fibrillation. With BCL-2 inhibitors, I’ve seen reduced rates of neutropenia, for example. And I’ll just say from my experience, I haven’t seen too much compromise in efficacy. So I think I would recommend for providers when you’re thinking about dose reduction, it’s really a balance of toxicity and efficacy. And I think with just how good our treatments are for CLL these days, I try to reduce toxicity. And I think in that way, it does maximize their efficacy.”

 Dr. Andres Chang also shared his perspective on dose escalation and dose reduction in CLL patient care. “…whether to dose-escalate or dose-reduce really depends on the treatment we’re talking about. For new therapies like BCL-2 inhibitors such as venetoclax (Venclexta), we do dose escalation at the beginning of therapy to mitigate potential side effects such as tumor lysis syndrome, whereas in most of the other scenarios we will try to do dose reductions in order to mitigate adverse events.”

Even though CLL treatments have shown increases in the number and complexity of treatment options, vital HCP best practices can help further expansion in empowering CLL patients. How do we improve care of patients? And how do we work with dose adjustments and side effect management in patient care? We hope healthcare providers can take advantage of these timely resources of the EPEP initiative to work toward optimal and equitable treatment for all CLL patients.

Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care

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MPN experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss effective strategies to improve MPN care including how patient diagnosis and symptoms can vary, best practices for shared decision-making, patient-provider communication, and family support. 

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MPN Care Barriers | Gaps in Patient-Centered Care

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 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?

Transcript:

Dr. Nicole Rochester:

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?

Kim 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?

Kim 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.

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What Are Key Challenges and Potential Solutions In MPN Management?

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In MPN management, what are some common challenges and possible solutions? Experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss the challenges of practice-related barriers including treatment options and navigating the logistics of treatment access. 

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Related Resources:

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

 MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

 Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care

Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care

Transcript:

Dr. Nicole Rochester:

Ms. Smith, can you speak to some of the emerging challenges and opportunities in the management of myeloproliferative neoplasms?

Kim 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.

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MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

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MPN experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss various treatment barriers that healthcare providers may encounter in team-based care and support solutions to help overcome barriers to optimal care.

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MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

 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 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 symptoms 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?

Kim 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 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.

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MPN Care Barriers | Gaps in Patient-Centered Care

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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.

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Peer Insights | The Power of Patient-Centered Care

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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.

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Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

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What is implicit bias, and how can patients’ choices be respected? PEN’s Aícha Diallo discusses implicit bias and unconscious bias, how to engage with patients to practice cultural humility, and tips for involving patients and families in shared decision-making. 

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 | The Power of Patient-Centered Care

Peer Insights | The Power of Patient-Centered Care

Transcript:

Dr. Nicole Rochester:

As healthcare providers, we know that it’s incredibly important to recognize and to respect patients’ choices. For many of us, that is a given, but I also think it’s important to be thoughtful as we explore this question. So I have the privilege today of connecting with the Patient Empowerment Network’s Vice President of Programs, Aïcha Diallo, a leading voice on this topic. It’s such a pleasure to connect with you today, Aïcha.

Aïcha Diallo:

Thank you so much for having me.

Dr. Nicole Rochester:

So, Aïcha, can you define what is bias? And can you also discuss the different types of bias?

Aïcha Diallo:

Absolutely. Implicit bias is also known as unconscious bias. It is a cognitive process that is intentionally activated when a person automatically classifies another person as a member of a group and applies stereotypical characteristics of the group. This could be positive or negative, but the issue with implicit bias is that it could be common and persistent, and it can be activated very quickly and unknowingly by situational cues.

That could be the color of someone’s skin or an accent that they’re hearing, and it can also impact a person’s perception of a situation and a memory, and even their behavior without that person’s intent and awareness. So the different types of biases that you will find in the healthcare system are race and ethnicity bias, age bias, sexual identity, gender, education, even appearance and ableism. Social-economic status and geographic location are also huge biases that tend to be seen.

The impact that bias does have on healthcare delivery is that it can lead to lower quality care among patients, specifically from underrepresented communities, and it can also result in, unfortunately, incorrect diagnosis, mistakes, delays in treatment, and even further mistrust and distrust from the patient community. So it’s really important for healthcare professionals to be aware of any implicit bias that they may have and really work hard to remove them. And they also have to pay very close attention to any blind spots that can be often present, that can obstruct their views. And the other thing I would also add is that they need to really have the willingness to suspend the “what they know” about a person based on generalizations about their culture and really be open to what their experience as their personal culture.

Dr. Nicole Rochester:

Thank you, Aïcha. And so, you mentioned the types of biases, and you mentioned the impact that they have on healthcare delivery and the type of care that our patients receive. You also said that it’s unconscious. And so I would love for you to share how can providers actually recognize this implicit bias? Are there some practical ways that they can actually recognize their biases?

Aïcha Diallo:

Absolutely. I think it’s very important to reflect on one’s own identity. It’s important to keep in mind that your patient should be treated equitably, with respect, with dignity, empathy, regardless of what they look like, who they are, what language they speak or where they live. I would also and continue to encourage to practice cultural humility, which is really taking a step back, listening to your patients, being present, allowing them to share what their thoughts, questions, concerns are, and to really avoid making any assumptions. And I would also add that it’s important to participate in courses to educate yourself on health disparities and cultural identities. Also check in with your colleagues and make sure that you are on the same page with the way that you are interacting with patients.

Dr. Nicole Rochester:

And finally, can you explain the importance of respecting patients’ choices even when they differ from our own and how this extends to including our care partners in the process?

Aïcha Diallo:

I think it’s very important to understand as a healthcare professional that you are the expert at what you do, but your patients and their families are experts at who they are, what they feel, what they want and need. So making sure to always engage in shared decision-making and including them in the process as well as their care partners in all the conversations and remembering that their care partners are an essential part of their loved one’s care and often make the decisions with or even for them.

So listening to both your patients and their care partner or whoever is in the room with them, that also extends to any additional loved ones that they bring with them. Ask them about their goals and their concerns. Make sure that you make eye contact with them. It makes them feel included as well in the process and direct your questions to both parties. I think applying these strategies are very important in this process.

Dr. Nicole Rochester:

That was wonderful. Thank you so much, Aicha. So if I could summarize what you’ve said, you’ve told us about bias and that implicit bias is unconscious, and so we’re typically not aware of it. You’ve shared some strategies for us to mitigate our biases, and you’ve talked about the importance of including our patients and their family members and support people in the decision-making. So thank you so much for sharing your expertise with us today.

Aïcha Diallo:

Absolutely.

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Peer Insights | Cultural Humility Case Studies and Practical Applications

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What are some cultural humility examples? PEN’s Aicha Diallo discusses the concept of cultural humility and provides real-world scenarios of healthcare provider reactions to perceptions about patients versus exercising cultural humility.

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 | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

 Peer Insights | The Power of Patient-Centered Care

Peer Insights | The Power of Patient-Centered Care

Transcript:

Dr. Nicole Rochester:

What do real-world scenarios teach us about cultural humility? I have the pleasure of connecting with Aïcha Diallo, Vice President of Programs at Patient Empowerment Network to really dive into this topic. Aïcha, could you share some real-life scenarios or challenges where cultural humility comes into play in healthcare settings?

Aïcha Diallo:

First, I think it’s important to get a better understanding of what cultural humility is. As a healthcare professional, practicing cultural humility is taking a step back to say, I have a patient in front of me, or I’m interacting with a patient, and I don’t know who they are. So I’m going to take a step back. I won’t make any assumptions. I’m going to listen to them. I’m going to let them share with me who they are, where they’re from, what their needs are, and what’s going on in order to meet them exactly where they are and to understand who is sitting in front of you and be able to then engage in shared decision-making and coming up with the best treatment option for them. So really, taking the time to see the unique elements of your patients instead of automatically characterizing them can also demonstrate respect and can help healthcare professionals give their patients the care that they need and want.

For instance, a physician is seeing a patient and to him the patient looks Latina. The patient has an accent, and the doctor assumes that she doesn’t speak English and automatically requests medical translation services for her in Spanish. Come to find out that the patient is fluent in English, is not Latina, but is from North Africa. So in this scenario, if the physician had taken the time to really listen to their patient and ask more questions and not make any assumptions, it would have really helped them identify their patient’s needs during their diagnosis.

Another scenario that I have that we should always try to avoid is, for instance, a patient of color comes to their doctor’s appointment, and the doctor assumes that they live in a lower income neighborhood and may not have a high level of education. And with that, assumes and chooses not to share any information about clinical trials with them because they believe that they may not be able to access those resources.

So one of the things that I would encourage that we do is to work really hard to remove any biases that we have and to really continuously practice cultural humility with your patients and their families and really remember that we can all be on the same page even though we have different stories.

Dr. Nicole Rochester:

Thank you, Aïcha, for explaining what cultural humility is and for sharing those life scenarios. Can you talk about what these actions look like in reality, how can providers truly apply cultural humility in their daily practice?

Aïcha Diallo:

I think it’s important to identify any personal biases that you may have, reflect on your own identity, remember to treat your patients with respect, dignity, and empathy, and listen to them more, hear them out, find out who they are, what their needs are, what their goals are. Have conversations with them, it’s important to hear them share where they’re coming from and where they’re headed, and this will really help in terms of coming up with the best treatment option for them. I think it’s also important to participate in courses to educate oneself on the different aspects of cultural humility, and how do you integrate that within your daily practices.

I think it’s important to not confuse cultural competency with cultural humility and really understand that you cannot be an expert at somebody else’s culture, that you have to take a step back and be humble and really listen to them and let them tell you and share with you who they are and what really matters to them. I think it’s also important to avoid making any assumptions as you could entirely be wrong, unless the person shares with you exactly what is important to them and who they truly are. And don’t forget to show some interest in what your patients are saying. And remember to recognize and really celebrate the uniqueness of their backgrounds, of their trade, and really do see them as people. I think that’s very important.

Dr. Nicole Rochester:

Aïcha, thank you so much for, again, sharing your wisdom. You’ve taught us a lot about what cultural humility is, the difference between cultural humility and cultural competence, and some real-life scenarios that we can all take away and some tactics for truly applying cultural humility in our practice. Thank you so much.

Aïcha Diallo:

Thank you for having me.

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Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

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How can diversity be appreciated by healthcare providers? PEN’s Aicha Diallo discusses diversity, how to recognize cultural values and unique backgrounds, and the benefits of appreciating diversity.

See More from EPEP CLL

Related Resources:

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

 Peer Insights | The Power of Patient-Centered Care

Peer Insights | The Power of Patient-Centered Care

Transcript:

Dr. Nicole Rochester:

Appreciating diversity means many things to many people. As healthcare providers, it’s important to navigate complex cultural landscapes and also learn how to foster genuine connections across differences. Well, Patient Empowerment Network’s Vice President of Programs, Aicha Diallo, is joining me to look at the power of valuing diversity in our patients and their families. Aicha, how can we as healthcare providers appreciate the unique differences among our patients, and how does this enrich healthcare?

Aïcha Diallo:

The ways to appreciate the uniqueness of your patients can include a lot of different strategies, but I would really focus on putting the patient at the center of everything you do. It’s important to also recognize and celebrate their cultural values and the uniqueness of their backgrounds. Do practice cultural humility, which means listen more, make less assumptions, focus on what your patients and their families are sharing with you, ask them questions that will allow you to get a better understanding of who they are and what their needs are. Also show respect and see your patients as people. And this is shown to really help in terms of improving healthcare outcomes for everyone, especially patients who are in underrepresented communities. And this very much helps in terms of further decreasing health disparities.

Dr. Nicole Rochester:

Well, thank you so much, Aicha Diallo, Vice President of Programs at Patient Empowerment Network. We appreciate your wisdom. 

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

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How can patients be empowered in their care? Expert Dr. Michael Grunwald from Levine Cancer Institute discusses different methods he uses in patient empowerment and efforts he makes to help ensure their best care.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Amy Comander: Why Is It Important for You to Empower Patients?

Dr. Amy Comander: Why Is It Important for You to Empower Patients?

 Dr. Abdulraheem Yacoub: Why Is It Important for You to Empower Patients?

Dr. Abdulraheem Yacoub: Why Is It Important for You to Empower Patients?

 Julie Lanford: Why Is It Important for You to Empower Patients?

Julie Lanford: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Michael Grunwald:

I can’t say we’re always successful, but at our program, we try to empower patients with information, information about disease, biology, and potential complications, risk stratification, and potential treatments. Of course, the information has to be tailored to the patient’s individual situation, which includes his or her medical problems, health literacy, and preferences. That said, I always do think education is key. In the case of myelofibrosis, symptoms are very important.

I think taking these symptoms seriously is critical in the care of MPN patients. We always try to help with symptoms. Sometimes we achieve excellent results in treating the symptoms. Sometimes we cannot get everything as perfect as we want it to be. And I think hearing patients and listening to them talk about their symptoms and understanding that the symptoms might be related to the myelofibrosis can be very helpful to the patient.