Tag Archive for: equity

What Do Renal Medullary Carcinoma Patients Have in Common?

What Do Renal Medullary Carcinoma Patients Have in Common? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) patients share some common traits, but what are they? Expert Dr. Nizar Tannir explains common traits seen in RMC patients and how families and patient advocates can work toward improved care for all RMC patients.

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

“…work with your congressmen and congresswomen, work with patient advocacy programs, raise awareness. Let’s get everybody the healthcare insurance that they deserve, like members of Congress so that nobody is turned away from going to the best facility that can help them.”

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Related Resources:

What Are Renal Medullary Carcinoma Noted Disparities?

What Are Renal Medullary Carcinoma Noted Disparities?

How Can Patients With Sickle Cell Trait Lessen RMC Risk?

How Can Patients With Sickle Cell Trait Lessen RMC Risk?

A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma

A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma


Transcript:

Cora:

What do patients living with renal medullary carcinoma have in common?

Dr. Tannir:

Patients living with renal medullary carcinoma have supportive families in my 22 years at MD Anderson treating patients with kidney cancer. And since we were involved with establishing an RMC program for research education and clinical trials treatment for patient with RMC, what I have noticed socially is these individuals have wonderful, wonderful family support. I can’t think of one patient with RMC and this has nothing to do to medicine right now, or about medical facts. I’m talking about the social fabric African Americans, because these are the people, these are the subjects who have RMC. The 95 percent of patients with RMC are African Americans in this country. People of the Black race. I am so impressed with their family support, not one individual came to me with…if it’s a teenager or even a young person without their mother with them, I am so impressed with that.

So they’re not alone that’s really what impressed me, what’s common about these RMC, patients with RMC is the love and the family support that these individuals, their mothers go a long way out of their way, they make it their mission to help their child and that child could be 18 or 28 or 30, and the mother is there helping them. They come from everywhere seeking the best for their child and that applies to siblings as well.

And, Cora, you’ve been, again, the support for Herman along his journey, I can’t think of any sibling who has done what you have done for Herman. So I can’t escape, but say, Black people have families who love them, they’re not alone and they support them, they’re able to get them to the top of the mountain, to the top of the mountain to the top of mountain to get them through the desert and the marsh and the oceans to get them to be cured if there is a cure that can be achieved.

And if not, they want to make sure they give them the best chance to survive. So that’s what I have seen in patients that’s common to patients with RMC. Unfortunately, there is another side of that story that is common to patients with RMC because they are young and many of them are either students or they’re working at different jobs, they don’t have…many of them do not have health insurance unless they serve in the military.

And that’s what’s been frustrating, we can discuss this later that’s been frustrating to see that young individuals with RMC want to come to MD Anderson, want to go to the moon if they can get the cure there, but they don’t have the health insurance that can give them access to the best place. And in RMC, it is MD Anderson. So I hope this will change. My activation tip is work with your congressmen and congresswomen, work with patient advocacy programs, raise awareness. Let’s get everybody the healthcare insurance that they deserve, like members of Congress so that nobody is turned away from going to the best facility that can help them. I hope before I retire that I will see this achieved. Because that’s really, I think if the number one on my list of things to do is this…is have equal healthcare access to everybody with an RMC diagnosis, so that they get the best care they deserve.

This is about, you’re talking about diversity, equity, inclusion. This is at the core, at the heart of what equity is. How can we be equal in the society if we don’t provide equal healthcare access to all our citizens, especially the young, especially the young the vulnerable, these people serve their country. They deserve to have the best healthcare or equal healthcare provision and like members of Congress, like the rest of us. 


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Empowering Providers to Explain Lung Cancer Biomarker Testing to Patients

Empowering Providers to Explain Lung Cancer Biomarker Testing to Patients from Patient Empowerment Network on Vimeo

Non-small cell lung cancer (NSCLC) clinician Dr. Jhanelle Gray from Moffitt Cancer Center has some knowledge to share. NSCLC expert Dr. Gray discusses her experience in biomarker testing and personalized combination therapeutics.

Watch to learn some of the best practices Dr. Gray has developed in treating and empowering NSCLC patients toward more culturally sensitive and equitable care.

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See More from Lung Cancer | Empowering Providers to Empower Patients

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Methods to Improve Lung Cancer Physician-Patient Communication

Transcript:

Dr. Jhanelle Gray:

My name is Dr. Jhanelle Gray, and I’m a clinical investigator focused on helping patients with non-small cell lung cancer (NSCLC). My research has concentrated on evaluating novel molecular markers and developing cutting-edge, personalized combination therapeutics to improve the outcomes of patients with non-small cell lung cancer.

Biomarker testing is so important to explain to patients, and I’ve learned some best practices along the way. I think it’s very important that we take the time to think about patients when we’re making decisions, and to be open to the idea that people think differently. We all come from different backgrounds, we have different experiences. I think trying to have empathy, taking a pause, and intentionally being an active listener are very important when a patient is sitting in front of you.

We need to be careful when we use the words manage or managing. We’re not managing the patient, what we’re doing is managing the therapies, we’re helping to manage the symptoms that patients experience. We also want to take time to slow down, look at what is happening in the room as you’re talking, as the patient’s talking to you…

Language is something that is critically important. When you’re delivering negative news, people will remember about 10 percent of what you say. There’s a lot going on, so patience is very important, using words that can resonate and land, and being open to questions are key. Making sure that, again, that you don’t judge and remember that you’re delivering a lot of information. We also must share the news in a culturally sensitive way and understand the dynamics. Again, it’s reading  the room.

Understand that this is an individual conversation. When the next patient comes in, you’re going to tailor the conversation to that individual. When the next patient comes in, you’re going to tailor the conversation to that individual. 

There are also some things to keep in mind about management. Patients do not fail therapies, our therapies fail our patients. And even when you’re talking to patients, you need to let them know, this is one of the things that can occur. While the intention might be to prepare them for what can happen in the future, you may not realize during the conversation that this could come across as blaming. 

Training is one of the ways that you can move this forward and also just pay attention, be thoughtful, and make sure that people feel as comfortable as possible when you need to deliver difficult news. Another time this becomes very important, is when you need to change therapies.

For the patients, they had gotten accustomed to a therapy, they knew how to take care of themselves, how to work with their team, and had familiarity with the side effects. And now you’re going to pivot treatments. To patients, this often feels like starting over from scratch. Thus, I think there are many sensitivities that must be considered, and we need to be thoughtful at those particular times.

I think that all providers should undergo cultural competency training. This can drive impact and help move us to the next level of reaching for that equity and honestly, lessening the inequities in healthcare.

Some things I’ve learned about communicating biomarker results with patients include:

  • Seeing patients as human beings first and the cancer as second.
  • Pause and think about what you’re saying and how you’re saying it.
  • Take your time and don’t rush the appointment.
  • Get to know your patient as a person.

For me, these actions are key to empowering my patients.


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Moving from Equality to Equity

Health equality means giving everyone the same opportunities, care, and services.  This has been the focus for laws, polices, procedures, and medical training. This focuses on elimination of differences in health diagnoses and treatments. Health equity focuses on fundamental justice. The goal is to ensure equal access to quality healthcare and good health, even if this requires giving some people more support and resources. Health equity considers different cultures, access to resources, and socioeconomic status. 

Under an equality focused approach, a doctor might offer the same test to everyone at the same interval or provide the same information to everyone. The doctor might also believe that, if they treat everyone the same, they are not behaving in biased ways.  Policies and laws that focus on this can resolve some health disparities, especially when the disparity stems from lower quality treatment, deliberate discrimination, or lack of adequate screening.   

Disease and health disparities cause different but preventable outcomes among groups. These can include race, such as Black men dying more often from prostate cancer due to lack of access to quality care and social inequality. Sexism can lead to the level of pain not being believed. Disparities can also create barriers due to lack of transportation, age, financial status, and literacy levels, to name a few. While current cancer screening guidelines focus on it equality, data indicates that these need to be adjusted to disparities within specific communities. The incidences of preventable cancer and higher mortality are impacted by the type of cancer, geographic location, race and ethnicity, country of origin, and gender. Studies and guidelines also need to expand to add more underrepresented groups.  While studies show that at least half of the patients offered to participate in a trial do, physicians are less likely to discuss a clinical trial with a patient of color. 

 To address the underlying issues and individual needs, public health needs to move toward an equity-based approach. Health equity considers different cultures, access to resources, and socioeconomic status. The goal is to ensure equal access to quality healthcare and good health, even if this requires giving some people more support and resources. Some initiatives are underway to address this.  The Woodlawn Center in Chicago, added a clinic to serve Black men. This has improved the experiences with the health care system, increasing a positive environment leading to increased usage. In Multnomah County Oregon a partnership between nonprofits, government organizations, local health care providers and several community- and faith-based groups was formed to address the specific needs of the local Black and Latino communities.   

We must strive to take equity further by applying justice, where we move to fix the issues. Equity-minded medical professionals must consider how social determinants of health such as access to a healthy diet, stress, and trauma affect outcomes. They must also consider how apparently equal systems lead to inequitable and unjust outcomes. An equity lens moves health systems closer to removing disparities. It also encourages policymakers to think about the myriad ways social environments affect health. 

Until medical schools and training of health care professionals expand to include environmental and social impacts, patients and care partners need to work with the health care professionals to include these factors.  Find out if the testing and screening is based on the “average” person or includes the segment of the population that includes the patient.  Do the “standard of care” recommendations consider the ability of the patient to comply?  For example, a doctor who knows a person has limited access to healthy food may work with the person to strategize ways to overcome this challenge and reduce the risk of health issues. The doctor might also lobby for policies to address this issue. There is no “average” person.  Everyone is unique and the best outcomes come from the medical personnel, patient, and care support working together as a team. 

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References

“What are the differences between health equity and health equality?”, Medical News Today 

Racial Disparities in Cancer Outcomes, Screening, and Treatment”, KFF 

“Equity vs. Equality: What’s the Difference?”, Milken Institute School of Public Health at George Washington University