Tag Archive for: decision-making

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

Why is it important to empower patients? Registered dietitian and oncology nutritionist Julie Lanford discusses her perspective about empowering patients and her approach to shared decision-making.

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Transcript:

Julie Lanford:

I think it’s super important that patients feel like they are in control of decision-making regarding their treatment regimen and how they want to approach their treatments. So I always spend time just trying to find out what are these patients’ goals for their life and for their treatment? What does their quality of life look like? So that we can tailor their treatments towards that and not only focus on eliminating cancer from their body, but rather seeing them as a whole person that wants to enjoy whatever time they have left and to tailor our treatments towards that.

So really in conversation with the patient, like what is it that they want to get out of the time that they’ve got left? Are they one that’s going to just go all for it and whatever it takes for treatment, or do they have other goals that they want to work towards, that maybe will define how we go about treatment? So those are the things that I like to make sure that patients feel like they are in control in the decision-making or very much informing the process, rather than just taking our sort of prescription as is.

Peer Insights: Understanding Cultural Competence vs. Cultural Humility

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.

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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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What Are Renal Medullary Carcinoma Noted Disparities?

What Are Renal Medullary Carcinoma Noted Disparities? from Patient Empowerment Network on Vimeo.

What are the disparities seen in renal medullary carcinoma? Expert Dr. Nizar Tannir explains how grassroots movements are so important in rare diseases like renal medullary carcinoma and his hope for equitable policy change. 

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen and I hope it will happen in the near future.”

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

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Transcript:

Cora:

Dr. Tannir, what are the noted disparities seen in RMC and what are some of the actions being taken?

Dr. Tannir:  

RMC affects predominantly African Americans in this country. Unfortunately when you say African American and healthcare, in the same sentence, there it is, there is healthcare disparity. Healthcare disparity is a fact we live in, is something I face all the time in our citizens who are minorities, people of color in this country, whether they’re African American or Hispanic or other citizens.

Unfortunately, they don’t have the same healthcare access to like other patients, like other individuals. So that right there is a healthcare disparity. We need to remove those barriers and that’s the only way we’re going to address healthcare disparities, is by making it not disparity anymore. And how you do that, you give healthcare access, equal healthcare access to those individuals, because those individuals want to live, people want to live, people want to take care of themself, of their bodies, their health, they want to live longer, they want to be cured if they have cancer. But we have to provide them the access to the best, be it the treatments that are available right now even clinical trials, even clinical trials of drugs that may not be FDA-approved, they should have access to those as well, they’re equal citizens in this country.

They have to have access. The same way I have access, if I got cancer, I have access to clinical trials at MD Anderson. A patient with RMC should have that same equal healthcare access. I hope that this, it takes a village, as they say, it takes a village for all of us to work together, it’s not going to happen overnight this is going to be grassroots like you, Cora, are doing, grassroots movement from the ground up. Healthcare policies will change only when all the citizens in this country realize and believe that healthcare is a right, it’s not a privilege, it is a right, it is a right. The most important right is health, life high, this is important so the only way we can achieve that is when we believe as a country, as citizens of this country, that we’re all equal, God has created us equal. We have to have access to healthcare. My activation tip is work with your representatives in Congress with your local politicians and with different organizations to raise the decibel to try to make this happen, and I hope it will happen in the near future. 


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Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) treatments are starting to expand, but where do things stand? Expert Dr. Nizar Tannir provides an update about current RMC treatment options and his perspective about RMC research and hope for emerging treatments.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…patients need to be well-informed and empowered, trust their physicians and work together to, on the road, to recovery and cure.”

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

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Advice for Newly Diagnosed Renal Medullary Carcinoma Patients

Advice for Newly Diagnosed Renal Medullary Carcinoma Patients


Transcript:

Cora:

Yes. How do you work with your RMC patients to make treatment decisions? What should RMC patients consider when deciding on treatments?

Dr. Tannir:

It’s always a partnership, Cora, this applies actually not just for RMC, not just between a physician, an oncologist like myself, and a patient with RMC. It is the partnership between every patient and every and their physician. They are treating oncologists, whether it’s RMC or any other kidney cancer type, or any cancer type, or any other health issue. It’s a partnership built on trust, built on knowledge and so the role of the physician is to explain to the patient their diagnosis, the prognosis, the treatment options, give them the facts. Patients need to be informed that’s why we have the informed consent when we offer a therapy. Informed consent is based on the physician or medical provider providing the information about the treatment, what benefits are, what potential complications or adverse events we call these. And the patient has to be aware of these things and they need to participate in their care.

And the decision-making is joint, it’s partnership. That’s the empowerment that we as physicians should give to our patients. They should be empowered in their care, empowered to know their disease, and they should know their disease very deeply. And only then that relationship is cemented through the trust, mutual trust, then the physician will offer the patient the treatment or treatments, there may be more than one treatment and it’s our role to go through these treatments and look at pros and cons. This treatment will offer you this, the treatment will offer you that. I think I can’t underscore more the importance of clinical trials. Clinical trials are important the treatment we are testing today may be experimental today, they may be the standard of care tomorrow.

So it’s important for individuals to see that participating in a clinical trial is not an experiment. Just we’re using subjects or human beings as guinea pigs it’s not, it is for their benefit because the results, the findings of the trials could directly or indirectly help those patients who participate in trials, but also help future patients. So participating in trials will not only help them, but help others after them. My activation tip is patients need to be well-informed and empowered, trust their physicians and work together to, on the road, to recovery and cure. 


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