Tag Archive for: medical mistrust

Prostate Cancer Clinical Trials | Is Mistrust a Barrier?

Prostate Cancer Clinical Trials | Is Mistrust a Barrier? from Patient Empowerment Network on Vimeo.

Is medical mistrust a barrier to prostate cancer clinical trials participation? Expert Dr. Yaw Nyame with the University of Washington discusses the history of medical abuse with some people of color and how medical professionals must guard against excluding some patients from clinical trials.

See More from [ACT]IVATED Prostate Cancer

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Emerging Promising Advanced Prostate Cancer Treatments

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What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities


Lisa Hatfield:

 My question about barriers is about the historical mistrust of trials. Do you find that fear and mistrust is a barrier? Have you experienced that at all in your practice?

Dr. Yaw Nyame:

There is no doubt that we have a history of medical and clinical abuse of vulnerable populations. We oftentimes point to examples like Tuskegee as an example of medical abuse. But medical abuse and medicine started in the slave chattels, and we have it, we have documented and published examples of Black slaves in the U.S. being the subjects of medical experimentation that’s carried out into, you know, the early forms of formal medical education where patients who showed up to county hospitals and public hospitals were subject to experimentation that no doubt has a deep rooted effect on populations of color who seek clinical care from academic institutions. However, we can’t let that history be an excuse for excluding Black and Brown populations from clinical trials. And what happens now is oftentimes I hear, well, these folks are, don’t trust us.

And so what can we do to build the trust? Well, in that process, we oftentimes fail to just ask people whether or not they want to participate in trials. There’s this presumption that while people aren’t interested, and I think what we need to do is ask everybody that comes through our doors to consider a clinical trial and to think about what barriers truly exist to prevent people from participating. because right now, if we really rely on this mistrust and distrust as a viewpoint of why people aren’t participating in trial, then we actually, we put the blame on our patients, right? And we don’t actually put the blame on ourselves as the main drivers of non-participation or what really it’s not a participation issue. It’s an exclusionist issue, right? We propagate a history of excluding you know, people of color from clinical trials.

[ACT]IVATED Prostate Cancer Post-Program Survey

Managing Medical Mistrust: Creating a Healthy, Trust-Based System

If there’s anything “positive” that has come out of the pandemic, it’s that it has brought to light the many disparities that are still prevalent in healthcare. These have translated into disparities in the Covid world based on where people live, their education level and income, and their race, among others.

The same can be said about oncology specifically. Health disparities in the diagnosis and management of cancer can be described as being “higher cancer death rates, less frequent use of proven screening tests, and higher rates of advanced cancer diagnoses.” This was (and still is in some areas) exacerbated by the pandemic, where patients either opted to delay treatment or were told they couldn’t undergo treatment because of the surge of Covid patients in clinics and hospitals. Additionally, there have been delays in patients undergoing screenings for cancers, including colon, cervical, and breast cancers, especially among those of racial and ethnic groups, who already had a decreasing level of access to healthcare services at the beginning of the pandemic.

Undoubtedly, this has increased the level of mistrust in the healthcare system. How are patients supposed to get the care they need? How do providers increase their level of trust with their patients who are already at a disadvantage and have a greater risk of becoming infected with Covid or any other disease? Below are ways the healthcare system can bring patients and providers together to create a healthy, trust-based system:

Providers should:

  • Establish empathy and understanding of patients’ needs and values (and reiterate them back to the patient)
  • Offer different treatment options, if available. Be willing to discuss the pros and cons of each option, including recommendations
  • Discuss clinical trials as a treatment option, if applicable. Yes, healthcare is a business, but instead of a provider seeing it as “giving up” a patient, understanding that the patient’s health and well-being comes first is much more important
  • Work with the patient’s insurance, if necessary, for prior-authorizations on medications and procedures
  • Be honest with your patients. Gauge and/or ask about the amount of information they can handle when providing a diagnosis
  • Tell a patient if they don’t know something and/or if errors have been made. Being vulnerable and transparent in this regard demonstrates that you’re human

Patients should:

  • Be respectful of the physician’s (and other patients’) time during each appointment by bringing in a list of questions that need to be answered
  • Utilize patient portals!
  • Ask questions if unsure of anything spoken about during an appointment, especially medications
  • Be your own advocate when discussing your health (i.e. bring up why certain solutions are important to you)
  • Understand there are multiple patients being taken care of and no one patient’s needs are more or less important than another

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

How Will Telemedicine Impact Prostate Cancer Clinical Trials? from Patient Empowerment Network on Vimeo

How will prostate cancer clinical trials be changed by the addition of telemedicine to the treatment toolbox? Expert Dr. Leanne Burnham details patients who can benefit from telemedicine visits — and explains some of the history of discrimination in medical care for BIPOC patients and treatment response of African American men with prostate cancer

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:


Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit



Dr. Leanne Burnham

So clinical trials, the whole concept of clinical trials has really come to the forefront of the media right now with everything that’s happened in 2020 and currently with COVID.

And so a lot of people, if they were not aware of discrimination in medical care or clinical trials in the history of the U.S., then now they’re starting to become well-versed in it. So now people are hearing, “Oh, Tuskegee syphilis experiment,” where those of us who are in science, in medicine study health series research is, this is not new to us, so we’re grateful that it’s coming to the forefront. People are learning about it, but there is a justifiable medical mistrust by many Black and Brown people, but African Americans in particular, because of what has been done and not done in terms of medical treatment in the past 400 years. And so, because of this medical mistrust, that leads to sometimes a hesitancy to participate in clinical trials, because there’s an idea of, I don’t want to be a guinea pig, so that’s just one aspect that leads to less enrollment in clinical trials. There’s the whole other side of things, right? There’s the fact that a lot of African American patients are not asked to be in a clinical trial, they’re not explained what the clinical trial entails, a lot of people don’t realize that clinical trial patients have access to what I call what I consider to be VIP access to what is cutting-edge, and it doesn’t mean that it’s not new, that it hasn’t been tested extensively. It’s just now that it’s available to a patient at a particular disease stage that we might be looking at, and we have a lot of reason to believe that it will help that patient.

So a patient that’s enrolling in a clinical trial has access to the VIP treatment. And then as an added bonus, they actually have extra engagement with providers, extra touchpoints with their providers that patients that are receiving standard of care and not enrolled in a clinical trial don’t have as much access to. That being said, in addition to that, for us to really forward medicine in what we call precision medicine, which is able to have medication that’s tailored to an individual person based on their DNA makeup, based on how their body would individually respond to a drug. It’s super important, highly important that we have diversity in patients that are enrolled in clinical trials. For example, if you don’t have enough African American men enrolled in the clinical trial for prostate cancer, then you don’t really know if that medication would work worse or even better in that patient. And what we’re actually seeing is there has been a development of race-stratified clinical trials in the past less than 10 years, really around five years, where we’ve looked at chemotherapy, we looked at hormone therapy, and we looked at immunotherapy, where we include enough African American men in the trials, and we look at how the drug responds in African American men versus other men. And we see that African American men actually have a better treatment response than other races, so how amazing is that? Where you have a demographic that is more likely to get aggressive prostate cancer and die much younger, and we’re seeing that if they’re given the new treatments that are really tailored to target the disease in ways that we weren’t able to do it before, that they’re responding better and having longer survival and better outcomes. And so it’s really important for all those reasons I described to increase African American participation in clinical trials.

Now, I say all that to get to this point, which is, enrollment is not easy when you don’t live near a clinical trial center or a hospital that’s offering whatever treatment you’re interested in trying out as part of a trial. And so we know that race in this country is tied to geographic location, it’s tied to socio-economic status, and so what telemedicine provides is in previous instances where maybe a patient lives out the way 60 miles or more from an institution that has a clinical trial that they would want to be involved in, now they don’t have to drive to that center. They can have a telemedicine visit, they can conduct labs where they’re at near their home, see if they qualify to participate in the clinical trial based on their own body’s physiology and how their blood work comes out and how their imaging comes out, see if they qualify. And then they can enroll in that clinical trial, and so telemedicine in that aspect really opens the door to people who may have been interested who live out of the way, maybe even in a rural setting where the institutions that they have nearby, don’t have what they are interested in using or what may be best for their treatment plan personally, and so telemedicine opens a whole new world to patients such as those.