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. 

Download the Recognizing Implicit Bias and Respecting Patients’ Choices Infographic

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.

Download the Appreciating Diversity Infographic

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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Peer Insights: Practicing Cultural Humility to Empower Your Patients

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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.

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Peer Insights: Understanding Cultural Competence vs. Cultural Humility

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Peer Insights: Understanding Cultural Competence vs. Cultural Humility from Patient Empowerment Network on Vimeo.

What’s the difference between cultural competence versus cultural humility? PEN’s Vice President of Programs Aïcha Diallo defines cultural competence and cultural humility, and she discusses why they are both vital in healthcare and advice for putting them into practice.

Related Resources:

Cultural Competence vs. Cultural Humility

Cultural Competence vs. Cultural Humility Infographic

 Peer Insights: Practicing Cultural Humility to Empower Your Patients

Peer Insights: Practicing Cultural Humility to Empower Your Patients

 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:

Today we’re going to talk about the differences between cultural competence and cultural humility, are both essential for fostering inclusive and respectful environments in the patient-physician dynamic. I have the honor and privilege of connecting with the Patient Empowerment Network’s, Vice President of Programs, Aïcha Diallo. Such a pleasure to connect with you today, Aïcha.

Aïcha Diallo:

I’m very happy to be here. Thanks for having me.

Dr. Nicole Rochester:

Wonderful. So, Aïcha, you have been leading community awareness efforts as a public health practitioner for over 11 years. You are a respected voice on cultural humility in healthcare. Can you explain why understanding the concepts of cultural competence and cultural humility is essential for fostering inclusive and respectful environments. And before you go there, if you could clarify for the audience, what is the difference between cultural humility and cultural competence?

Aïcha Diallo:

Absolutely. So they’re both very important concepts, but cultural humility is really taking the time to understand and see the unique elements of your patient’s identity and experience that shapes exactly who they are. And it’s very important because it allows healthcare professionals to be able to listen, show respect, be humble, help give their patients the care and need they want. It also opens up a door for them and their patients to engage better and share decision-making. Now, when it comes to cultural competence, it is knowledge we’ve required through a course or a curriculum is something that as healthcare professionals, we have learned. 

So it almost feels like checking off a box. It tends to promote competence and expertise when we know that we can never really be experts at somebody else’s culture or personal history, experience, preferences, and even beliefs. Cultural competence, I have to say, tends to focus on the group trait as a whole. So it would specifically touch on the ethnic and racial backgrounds of a person, while cultural humility looks at the bigger picture, what is their race, ethnicity, age, gender, sexual identity, and more. So that’s the difference between cultural humility and cultural competence. But having both and practicing both as you are interacting with patients, care partners and their families is very important.

Dr. Nicole Rochester:

Wonderful. I appreciate that. I personally have challenges with the term cultural competence, and so I really appreciate you explaining those differences and how really humility, they’re both important, but humility is really that journey that we all should take.

Aïcha Diallo:

Absolutely.

Dr. Nicole Rochester:

So in terms of advice or recommendations for the providers that are watching, how do we operationalize this? What does cultural humility look like on a practical level?

Aïcha Diallo:

So on a practical level, it’s important for healthcare professionals to first identify their own cultural identities and biases. You have to know your own and what you’re coming with in order for you to be equipped to be better present for your patients. It’s important as well, to be honest about their lack of knowledge about a patient’s culture and experience. We cannot know everyone, so learning directly from them is very important. It’s also crucial to not make any assumptions. It’s important to listen, ask appropriate questions.

Again, be humble and respectful of everyone’s culture and experiences. And I would say really give your patients and their care partners or other family members that are in the room or came with them more time to share about themselves. This is a way that healthcare professionals are going to learn directly from their patients and know who they are and what their needs and wants are. I would also add educating oneself and learn about other cultures is another very important component to that.

Dr. Nicole Rochester:  

Thank you so much. So if I could summarize what you’ve said, it sounds like it’s important. Of course, we know to practice both, and competency is really that knowledge and education, but as you stated, sometimes it turns into kind of a check the box. I’ve reached the destination and we know that this is really something. There’s never any end point to this journey.

And in contrast, you shared that humility is really about learning, being open to learning, wanting to learn, taking the time, which we know we don’t have a lot of time in these encounters, but taking the time to actually learn about our patients and listening to what they share. And I also appreciate you sharing, it’s also identifying our own identities and biases. So thank you so much for being here and for illuminating this conversation.

Aïcha Diallo:

I would also add to this, that cultural humility is really taking a step back and saying, I don’t know, and I would love to hear more about you. I’m not sure what may be going on here or what you need to add or how I can better find out about your background. Would you like to share more? It’s really that humility piece that’s extremely important.

And that opens up that door, I would say, or leaves room on the table for the patient to also feel comfortable to be  sharing more and for them to come to a common ground in order to find the best treatment course for them or the best plan for them and meet them exactly where they are.

Dr. Nicole Rochester:

Meeting them, where they are. Thank you so much, Aïcha. I agree. 

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Peer Insights: Fostering Clinic-Wide Engagement for Myeloma Clinical Trials

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Peer Insights: Fostering Clinic-Wide Engagement for Myeloma Clinical Trials from Patient Empowerment Network on Vimeo.

Dr. Craig Cole from Karmanos Cancer Institute speaks to the success of clinical trials relying on not only provider endorsement, but also on the collective enthusiasm and involvement of all healthcare staff, which cultivates a patient-centric culture promoting myeloma trial participation and engagement.

See More from EPEP Myeloma

Related Resources:

Peer Insights: Maximizing Myeloma Patient Care

Peer Insights: Maximizing Myeloma Patient Care 

 HCP Strategies for Navigating the Pre-trial Eligibility and Informed Consent Process

HCP Strategies for Navigating the Pre-trial Eligibility and Informed Consent Process 

 How Can Myeloma HCPs Overcome Unforeseen Practice Related Barriers?

How Can Myeloma HCPs Overcome Unforeseen Practice Related Barriers? 

Transcript:

Dr. Craig Cole:

Some of the other barriers to clinical trials, the nurses and the other staff in the cancer center aren’t aware of the clinical trials, that when a patient goes through the clinic, they talk to more than just the provider. They talk to the treatment nurses, they talk to the intake people, they talk to the MAs, they talk to the scheduling people. And there was a study that was done a few years ago in looking at patients who were given consent forms and declined clinical trials. And they found that a lot of patients declined clinical trials, were because they said that, well, their doctor didn’t want them on the trial.

And when they looked further into that, they saw that, well, the doctor offered them a clinical trial, but when they discussed the clinical trial with a nurse practitioner, when they discussed that trial with a treatment nurse or the MA or any of the other staff, when they didn’t know about the clinical trial, that was considered well, if you don’t know about the clinical trial, it must not be good for me. And then they withdrew from the trial.

It really shouldn’t be left in the provider compartment. That excitement should be clinic-wide. And when you have that all-in approach where everybody’s involved, everyone’s excited about clinical trials, it produces a culture of clinical trials that everybody wants to be part of, and the patients then can jump on that bus and feel comfortable participating in the trial. 

Peer Insights: Maximizing Myeloma Patient Care

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Peer Insights: Maximizing Myeloma Patient Care from Patient Empowerment Network on Vimeo.

Dr. Beth Faiman shares how clinical trials offer vital support for myeloma patients by providing access to a diverse team of healthcare professionals. Despite existing challenges, such as outdated procedures, practice barriers within the hospital organization and scope of practice limitations, Dr. Faiman speaks to the pivotal role of multidisciplinary teams for maximizing myeloma patient care.

See More from EPEP Myeloma

Related Resources:

Peer Insights: Fostering Clinic-Wide Engagement for Myeloma Clinical Trials

Peer Insights: Fostering Clinic-Wide Engagement for Myeloma Clinical Trials 

 How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

 Do Myeloma Treatment Advancements Create Care Challenges?

Do Myeloma Treatment Advancements Create Care Challenges? 

Transcript:

Dr. Beth Faiman:

How can we harness all of our resources to provide the best care to that patient? And clinical trials are one of them. Clinical trials will offer support so that the patient can have access to a pharmacist, a social worker, a dedicated nurse, a dedicated line to call if they’re having a symptom. But to speak to some of the outdated procedures, again, it goes to scope of the practice. No matter how highly trained they are experientially or with credentialing, there are practice barriers within the hospital organization within state laws.

The nice thing about clinical trials though, is that nurses in most institutions are very able to watch that clinical protocol. They’ll look for who needs to hold a medication because of toxicity, consult with the provider, and then they’ll say, “Okay, hold your dose. And when your toxicity resolves, reduce it one dose level, and come back for labs,” or whatever that would entail. So while there are outdated practices historically, I think that within clinical trials nursing it provides some more autonomy for oncology nurses, again, as a part of that multidisciplinary team to enhance patient care.

Recognizing Implicit Bias and Respecting Myeloma Patients’ Choices

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Recognizing Implicit Bias and Respecting Myeloma Patients’ Choices

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See More From EPEP Multiple Myeloma

Empowering Multiple Myeloma Providers to Empower Their Patients

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Empowering patients is at the heart 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 multiple myeloma, the Empowering Providers to Empower Patients (EPEP) initiative. The program expands PEN’s reach to healthcare professionals with the goal to improve physician-patient communication; shared decision-making; and the role that myeloma patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.

The EPEP initiative includes the following resources:

  • EPEP Roundtables with Dr. Nicole Rochester and myeloma experts Dr. Beth Faiman, Dr. Craig Cole, RuthAnn Gordon and Charise Gleason discuss a range of topics including how to help your myeloma 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 myeloma health care team, and ins and outs of clinical trials and communication about clinical trials.
  • EPEP Resources provides the resource guide, infographics, blog, peer insight videos, and other resources to improve patient care.
  • EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources to share with your patients. PEN delivers a curated PDF according to the patient’s interests and delivers it efficiently to their inbox.

Panel of Experts

Key Takeaways from Myeloma Experts

PEN had the opportunity to interview experts Dr. Beth Faiman, RuthAnn Gordon, Charise Gleason,  and Dr. Craig Cole 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 inform them about research and clinical trials.

The number of myeloma treatment options has expanded tremendously over the past few decades, and nurses play a key role in helping patients. Expert Dr. Beth Faiman from Taussig Cancer Institute shared her perspective about how patient care has changed. “…the difference from before when we had very few available therapies to now we have an armamentarium of drugs, and so deciding whether or not to participate in a clinical trial is super important.

And how can we support our patients who are now living a longer life span with all these cumulative physical and financial issues? How can the nurses support the patients to get the access to the drugs and access to the financial resources they need so that they continue living a good quality of life?…I think nurses can fill that critical gap of finding resources for patients to allow them to participate in clinical trials to live a better life.” 

The expansion of treatment options has also generated some more complex clinical trials. Expert research nurse RuthAnn Gordon from Memorial Sloan Kettering Cancer Center explained the role of research nurses in these more involved trials. “…we’re guiding them, we’re educating them, we’re ensuring that they do understand the potential side effects, but do understand also what their role is in the clinical trial and what they can expect. And I think that in terms of what has changed is that we have really put more value on the fact that having that nurse that has the expertise in the clinical trial and really can gatekeep all of the patient care coordination that that involves from a clinician experience and from a clinician perspective, has really helped to ensure that our patients are ready, that we can do our very complex trials.”

Panel of Experts

Solutions for Reducing Myeloma Disparities

Another essential factor in clinical trial participation is educating patients about trials. Black myeloma patients comprise 20 percent of myeloma patients but only 4 percent of myeloma clinical trial participants. Expert Dr. Craig Cole from Karmanos Cancer Institute shared his perspective about how informing all healthcare members can create a more inviting atmosphere around clinical trials. “We make sure that the treatment nurses, the MAs, the intake people know what we’re doing, know about our clinical trials, because that’s the fun part about what we do.

The fun part is when we say, look, my goodness, this four-drug therapy had a 100 percent response rate. That shouldn’t be left in the physician compartment. It really shouldn’t be left in the provider compartment. That excitement should be clinic-wide. And when you have that all-in approach where everybody’s involved, everyone’s excited about clinical trials, it produces a culture of clinical trials that everybody wants to be part of, and the patients then can jump on that bus and feel comfortable participating in the trial.”

Involving  the entire myeloma team is truly key in expanding patient care. Expert research nurse Charise Gleason from Winship Cancer Institute explained the success they’ve seen with their team members and in their clinical trial participation rate. “The myeloma team, we have APPs who are off that day who call in for this meeting, because we go over our patients, we talk about what’s, clinical trials are available, that’s just how we practice and we think about that.  The myeloma team, we have APPs who are off that day who call in for this meeting, because we go over our patients, we talk about what’s, clinical trials are available, that’s just how we practice and we think about that.

In Atlanta, in our database, 40 percent of our data is based on Black patients. And we enroll about 32 percent to 33 percent of Black patients on clinical trials. And what our work on trials has showed us too, if you give the same access to every patient, you have good outcomes and good outcomes for Black patients, if not better, than white patients. So we all need to be versed on that, whether you’re the research nurse, the clinic nurse, the physician, the advanced practice. And so we really do bring that approach to taking care of our patients.”

Even though myeloma treatments have shown increases in the number and complexity of treatment options, vital HCP best practices can help further expansion and in empowering myeloma patients. How do we improve care of patients? And how do we work to remove barriers to clinical trial participation? We hope healthcare providers can take advantage of these timely resources of the EPEP myeloma initiative to work toward equitable and inclusive care for all myeloma patients.

How Can Myeloma Care Providers Engage Patient Interest in Clinical Trials?

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How Can Myeloma Care Providers Engage Patient Interest in Clinical Trials? from Patient Empowerment Network on Vimeo.

What are some ways that myeloma care providers can increase interest in clinical trials? Dr. Craig Cole from Karmanos Cancer Institute and advanced practice provider Charise Gleason share insight on information they provide to patients and ways they improve communication about clinical trials.

Download Resource Guide  |  Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

How Can Myeloma HCPs Initiate Clinical Trial Conversations?

 How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

 Do Myeloma Treatment Advancements Create Care Challenges?

Transcript:

Dr. Nicole Rochester:

I’m going to go to each of you just to share maybe one takeaway that you’d like to leave with the audience. So I’ll start with you, Dr. Cole, one takeaway.

Dr. Craig Cole:

One takeaway. I actually thought about this, but I think that the biggest takeaway is, if I can squeeze two in.

Is that, is to remember that basically they’re all patients want to be involved in clinical trials and the ownership of having patients on clinical trials is really on us to really talk to them over a longitudinal period, to talk about clinical trials, to have them involved. To not look at a patient saying, “No, they don’t want to be on clinical trial.” That you really engage that patient to tell them about really the incredible progress that we’ve made, how competitive clinical trials are and how exciting it is to be part of that research environment. And that would be my one, my two sort of closing thoughts.

Dr. Nicole Rochester:

And what about you, Ms. Gleason?

Charise Gleason:

Dr. Cole said it well. Please discuss this with your patient. Listen to them. Listen to their concerns. Don’t make decisions for them based on bias that maybe you’re bringing in. Don’t make decisions based on maybe it’s too far. Patients drive hours to go on clinical trials, and let’s give them the information and have that conversation.

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How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

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How Can Myeloma HCPs and Nurses Help Manage Patient Concerns? from Patient Empowerment Network on Vimeo.

How can myeloma care providers help in managing clinical trial concerns? Dr. Craig Cole from Karmanos Cancer Institute and advanced practice provider Charise Gleason discuss common concerns that they have encountered with patients and how they addressed the concerns.

Download Resource Guide  |  Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

How Can Myeloma HCPs Initiate Clinical Trial Conversations?

 How Can Myeloma Care Providers Engage Patient Interest in Clinical Trials?

Transcript:

Dr. Nicole Rochester:

How do we mitigate and manage concerns despite all these wonderful things that both of you have shared? I’m sure that patients and family members have concerns about myeloma clinical trials. And so I’ll start with you, Ms. Gleason. And as you hear concerns from patients and families over the years possibly related to fear of randomization, fear of getting the placebo, you all have mentioned some uneasiness about adverse effects. How do you effectively mitigate and manage these concerns with patients and their family members and care partners?

Charise Gleason:

Yeah, you just have to continue to have open communication. And if you’re, if a patient is accustomed to you mentioning clinical trials, then when you present one to them, right? They’re a little more open to it. But not everybody starts with us. And we get referrals in midway and different parts and different paths along the way. But patients we do hear, “I don’t want to get a placebo.” Or you’ll mention a clinical trial and somebody will say, “Am I ready for hospice?” And it’s, you have to go back and start that education again that, no, you’re getting good treatment on this, a registry trial, for instance, you’re going to get standard of care treatment plus or minus something else, right? And so we really have to go back and educate that you are getting treatment. You’re going to be watched closer than any of our other patients actually.

You’ve got a whole team around you that’s talking about your trial and our patients every week. And so I think that our excitement and our being positive, we can get those patients to enroll on trials. I think something that makes me really happy is, we keep a list of every treatment line, and when you go through and it’s like standard of care, clinical trial, clinical trial, standard..it’s we’ve done the right thing then, right? Our patient has had full advantage of what’s available to them when we do that.

Dr. Nicole Rochester:

That’s wonderful. Thank you for sharing that. 

What about you, Dr. Cole? Do you have anything to add with regard to managing the concerns that come up?

Dr. Craig Cole: 

Yeah. The one thing that I tell patients, and I tell patients one-to-one, and when I do talks for some of the efficacy groups that I tell lots of patients that. That in 2024, myeloma trials are incredibly competitive. And the only, the best, best drugs, now float to the top as part of our clinical trial portfolio. There were days I remember begging companies for clinical trials saying, “Please, please think about myeloma.” And we were struggling.

Now, it is incredibly competitive, and that competition does a fantastic thing for patients because what we see in the clinical trial portfolio are drugs that are safer and safer and safer, and drugs that are more effective and more effective. When you go to these meetings and the expectation is that our response rate needs to be over 60 percent, then you know that the clinical trial mail you, that we work with them, is of a super high quality, which you really can’t say for a lot of other types of cancer.

So I tell patients that their fears that they have are absolutely justified. And one thing we teach the fellows, the residents and the medical students, is that you validate those concerns and you listen to those concerns and you don’t ignore it or blow through it. That you absolutely…those are the most important parts of that conversation. And if you don’t validate it, the patient says, “Well, I have a fear of randomization.” And you go, “Hmm, there’s no such thing.” Then that’s not validating. And that’s not even listening. That’s just moving on because you don’t have that concern, but you’re not bringing that, you’re not validating the patient’s concern. And so you have to be very, very careful in doing that because there are multiple studies that have shown those are the big concerns.

 Also, bringing up the things that are facilitators for clinical trials, that if there is an opportunity for reimbursement for travel or reimbursement for hotel stays or reimbursement that we say that this trial has a reimbursement program, or if we say that use other things that help facilitate clinical trials like speaking to the family, not just speaking to a patient, but speaking to the caregiver and speaking to the extended family that that patient will have a conversation with are really important conversation because the more people that you can talk to, that’s part of that patient’s decision-making group, which can be very different from patient to patient based on their culture, the more likely you are to get a consensus among that decision-making group for the patient to go on a clinical trial.

Dr. Nicole Rochester:

Those are great tips

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How Can Myeloma HCPs Initiate Clinical Trial Conversations?

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How Can Myeloma HCPs Initiate Clinical Trial Conversations? from Patient Empowerment Network on Vimeo.

How can myeloma healthcare professionals start clinical trial conversations? Dr. Craig Cole from Karmanos Cancer Institute shares how he initiates conversations with newly diagnosed patients and how myeloma community groups also help patients and families.

Download Resource Guide  |  Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

 How Can Myeloma Care Providers Engage Patient Interest in Clinical Trials?

 How Can Myeloma HCPs Overcome Unforeseen Practice Related Barriers?

Transcript:

Dr. Nicole Rochester:

That’s an amazing success story. Thank you for sharing that. What about you, Dr. Cole, with regard to potential strategies for healthcare providers, what are some things that they can implement for initiating these clinical trial conversations early in the journey, particularly in the current environment?

Dr. Craig Cole:

Yeah. And Ms. Gleason had mentioned this at kind of the top of our talk about having those conversations on day one. On day one of our patients coming in either as a second opinion, as a new diagnosis, as in whatever setting, we talk about…we have a list that we go through with the patient that talks about their stage or the disease, how we’re going to follow up. And there’s a line that I have to address, which is, clinical trials. So I mentioned our clinical trials, I mentioned on day one. And I think one strategy that other healthcare providers can take is that, even if you don’t have a clinical trial at that time, so right at this moment, we don’t have an upfront clinical trial.

We have one for maintenance therapy, post-transplant, but we don’t have an upfront trial. I mention that. I say that there are clinical trials that are available for your myeloma. Right now we don’t have a clinical trial for upfront myeloma, but we can refer you for a second opinion for an upfront trial if you’re interested or…and we have a clinical trial in maintenance.

So that sets the groundwork that we’re going to talk about clinical trials on every visit. And that it doesn’t come as a surprise. Because the last thing you want to do is that someone is having a relapse and you say, “Oh, we’re going to talk about clinical trials today.”  Because then it’s like, “Oh my goodness, this is a desperation.” This is a desperation move, and it puts a lot of anxiety when you frame it, and we need to do this now as opposed to having on day one.

The second thing that I think really helps is getting patients involved in the myeloma community, especially with the support groups having not only the patients, but their care providers and families involved in the myeloma community. Because the myeloma communities through a lot of the support agencies like the IMF, the MMRF, the HealthTree, they have a very strong clinical trial culture. And when patients get involved, not only is that empowering to see other myeloma patients doing well, but to hear other myeloma patients talk about their experiences in clinical trials really, really helps. And I think the last thing that we use to help patients, go through clinical trials, is a couple of other things, is one, every time we talk about treatment options,  if that is maintenance, if that is smoldering, if that is a relapsed/refractory therapy, we always put clinical trials in that conversation.

 Again, even if we don’t have that clinical trial at our institution, we talk about this as an option that we could refer you out to. And, and then we always talk about…I think one other little thing is that every visit that patients have, I somehow include some of the new things that are happening in myeloma. Now, my patients kind of expect it. They expect. They know when December and June is because when I see them after ASH and ASCO and sometimes they’re like asking, “So what’s new?” And once we get into that groove, they see, gosh. There are response rates that are off the charts with some of these new things. These patients are involved in clinical trials and the myeloma and multiple myeloma research is progressing at such a rate and things are getting better that patients want to be involved in it.

So we’re always talking about new things. Do I go into depth of detail with talquetamab (Talvey) and pomalidomide (Pomalyst). I don’t go into depth of detail. And I say, where I was this clinical trials at our last ASH meeting that combined these two drugs for a relapsed/refractory myeloma, even patients who were refractory to some of the drugs you’re on now. And response rate was like 100 percent. And then when I talk about those clinical trials in the future, they’ll remember, man, that guy was talking, he’s all upset about these clinical trials. Maybe I want to be involved in them. So that’s kind of my few strategies that I use. 

Dr. Nicole Rochester:

I love that. And what I really hear both of you saying is this idea of normalizing conversations about clinical trials and not introducing them as like a Hail Mary, so to speak, but really from the very beginning, letting patients and care partners know that this is a viable treatment option. So I think that is wonderful. And I can say like, your excitement is contagious for me, so I can only imagine how excited the patients that you work with feel.

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