Empowering Patients: Bridging the Health Literacy Divide for Informed Decision-Making

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Health literacy, as broadly defined by the World Health Organization,  involves the capacity of individuals to “gain access to, understand, and use information in ways which promote and maintain good health for themselves, their families, and their communities.”

The goal of health literacy is not ‘dumbing down’ information; it’s about leveling up and empowering individuals to make informed decisions about their health and medical care.

The State of Health Literacy in the U.S.

According to the National Assessment of Adult Literacy, 36% of adults in the United States possess basic or below-basic health literacy. This statistic has profound and multifaceted implications. Firstly, low health literacy contributes to health inequality. Health literacy is a major barrier to accessing health resources and services. This imbalance contributes to disparities in health outcomes, creating a divide that widens existing inequalities.

Secondly, low health literacy affects individuals’ ability to engage in self-care effectively. Almost four out of ten adults struggle to manage their medications or misunderstand essential medical instructions.

Moreover, trust in healthcare providers is closely tied to health literacy. Effective healthcare relies on trust. Low health literacy, however, can undermine trust in healthcare professionals.

In our role as patient advocates, we strive to make health information more accessible, reliable, and easily understandable. Below is a checklist of seven steps you can take to improve your advocacy’s health literacy level.

7-Point Checklist to Improve Health Literacy

1. Accessibility

Healthcare is often filled with jargon and technical language, making it intimidating and confusing. The goal of our advocacy is to minimize health communication barriers so that individuals can make informed decisions no matter what their educational background or medical language experience may be. Embracing accessible language bridges the communication divide, empowering individuals to navigate the complexity of healthcare with confidence.

Actionable Tip: Break complex information down into smaller, digestible chunks to make it easier to understand. Organize information using clear headings and bullet points. If medical terms are unavoidable, provide clear definitions.

You can learn more about accessible content by reading Transforming Your Social Media Presence: 5 Steps to Foster Inclusivity and Advocate for All

2. Clear Navigation

Clear navigation of health content requires logical organization of information. For instance, when presenting information about a medical condition, organize it chronologically from symptoms to treatment options.  Additionally, a navigation system that is clear and easy to use should also work across a wide variety of devices, ensuring a consistent experience across computers, tablets, and smartphones.

Actionable Tip: Make your website or blog easy to navigate. There should be a prominent search bar and a menu with clearly labeled categories or a clickable icon to help people find the information they need when they visit your site.

3. Cultural Sensitivity

When health information reflects an individual’s cultural context, they are more likely to understand and resonate with it.  Health and culture are deeply intertwined, and cultural sensitivity involves recognizing and respecting that health is perceived and pursued differently in different cultures. Trust can be built by respecting these differences, dispelling misconceptions, and bridging gaps.

Actionable Tip: Avoid making assumptions about individuals based on stereotypes or generalizations. If possible, seek feedback from community leaders or representatives to ensure that your communications align with cultural values and sensitivities.

4. Visual Aids

Visual aids, such as charts, graphs, illustrations, and diagrams, enhance health communication by making information more engaging and accessible. Visual learners can grasp health-related concepts more easily through these aids than through text-based information. Visual aids also act as a universal language transcending linguistic barriers and making health information accessible to a wider range of individuals.

Actionable Tip: Ensure visual aids are accessible to everyone.  Provide alternative formats for those with visual impairments, such as text descriptions or audio explanations.

Further Reading: Patient Advocacy: 6 Tips for Making A Visual Impact on Social Media – Patient Empowerment Network (powerfulpatients.org)

5. Inclusive Design

Different learning styles are recognized through inclusive design. Visual aids may be preferred by some, whereas auditory information may be preferred by others. By considering different learning styles and abilities, inclusive design empowers individuals to actively participate in health education, leading to improved health literacy.

Actionable Tip:  Use alt text (short for alternative text) for images. Individuals with visual impairments can understand website images this way. In addition, consider closed captions for videos and readable fonts with sufficient color contrast.

6. Interactive Platforms

Interactive content, such as live video streaming creates an experience that reaches beyond static information dissemination. It empowers individuals to engage with expert insights and creates a sense of community around health-related topics. This approach can contribute significantly to enhancing health literacy.

Actionable Tip: Bring in healthcare professionals to share their expertise on your livestream.   Ask attendees to submit questions in advance or during the live session to encourage active participation. Closed captioning should be available to ensure inclusivity and accessibility.

7. Trustworthy Sources

Users feel more confident in the reliability of health information when credible sources and publication dates are transparently disclosed. Maintain trustworthiness by reviewing and updating health content regularly. This ensures that information remains accurate, aligns with the latest research, and meets evolving standards.

Actionable Tip: To keep users up to date on the currency of content, clearly indicate when it was last reviewed or updated. By regularly updating your content, you demonstrate your commitment to providing accurate and relevant information to your audience and establish long-term trust.

Further Reading: 12 Tips to Create an Educational and Inspiring Roundup of Healthcare News

Conclusion

The patient advocacy community can play a key role in closing the health literacy gap. By championing accessible, trustworthy health information, we contribute to a more equitable society. Our mission is clear: empower patients through knowledge, and transform health outcomes for all.

Equity through Empowerment

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Lazarex Cancer Foundation Utilizes digital sherpa® Train-the-Trainer Program to Create Health Equity

Dr. Marya Shegog is all about health equity, and when she joined the staff of Lazarex Cancer Foundation in January 2021, she knew right away that the foundation’s partnership with Patient Empowerment Network’s (PEN) digital sherpa® Train-the-Trainer Program was going to help bring health equity to the communities that Lazarex serves. “We saw the digital sherpa® digital literacy skills training workshops as a tool that so many in our communities need,” says Shegog. “We offer digital sherpa® to our communities to help increase their feelings of empowerment.”

The digital sherpa® Train-the-Trainer program was designed so that organizations like Lazarex could train their employees, volunteers, and other individuals to be trainers, for the digital sherpa® program, which helps cancer patients learn to use technology as a tool to help them through their cancer journey. The digital sherpa® program’s personalized workshops help patients and their care partners learn basic internet and social media skills, how to access their patient portals and find information and support regarding their illness, and often answer their specific technology-related questions.

Lazarex has primarily implemented a part of the digital sherpa® Train-the-Trainer program called the Digitally Empowered® Course, which is a 10-module, self-guided, online tool that can help patients learn things like how to access and navigate the internet, how to use social media and online support communities, and how to identify credible websites. Dr. Shegog found the Digitally Empowered® Course so impactful that she says she wanted it embedded in their program. She ensures that every employee, every volunteer, and every one of their community members have access to the course. She has even insisted her family members and friends take the course regardless of age or health background. She says she wants everyone in her community to feel so comfortable with the course that they would feel confident teaching it to others. “These days when you have cancer, you have no choice but to use electronics and technology,” says Dr. Shegog, adding that the self-guided aspects of the Digitally Empowered® Course are particularly helpful because patients can do it whenever they need to and differing time zones don’t get in the way, which is important for a group like Lazarex that operates in both California and Philadelphia.

Lazarex operates Cancer Wellness HUBs in Philadelphia, Los Angeles, and in the San Francisco Bay area. The HUBs are described by Lazarex as fully immersive cancer programs that are place based, community led, and culturally appropriate safe spaces for at risk community members. Through the HUBs and their other programs Lazarex helps patients who are often “medically underserved” gain access to clinical trials. The organization helps to identify clinical trials, helps offset expenses incurred through treatment, and provides community outreach and engagement. The hope, says Dr. Shegog, is to create health equity especially in the cancer space. “We know that healthcare is still very much physician led, and that there are so many biases in healthcare, and they go very deep and can hinder who has access to clinical trials,” she says. “Doctors need to inform patients about clinical trials but, if they have biases about their understanding of who the patient is, they may not do that.” PEN’s programs help combat any biases doctors may have by giving patients the knowledge to use technology to learn about their cancers and the treatment options available. “PEN is critical in creating health equity. That’s why I was so strategic about making everyone so comfortable with it, so they weren’t just comfortable using it, but also with sharing it.”

While digital sherpa® workshops are typically targeted toward older patients and care partners, Dr. Shegog points out that Lazarex community members of all ages have benefited from the program, and that while younger users are very comfortable using technology, they aren’t always educated about identifying trustworthy sources online. One of the Lazarex volunteers that is in her early 20s completed the Digitally Empowered® Course and learned how to find reliable sources online. “Gaining insight into how to identify what’s reliable was really helpful for her and came on time as she just recently had a family member diagnosed with cancer, and she reported that she was better able to support that family member through the tools she learned.”

In 2021, organizations participating in the digital sherpa® Train-the-Trainer program were each given a microgrant of $2,500 to use in whichever way the organization chose to best implement the program in their community. Lazarex used their microgrant to ensure community members had access to the programs by providing hot spots and other means of technological support. Going forward, Dr. Shegog plans to continue using the digital sherpa® Train-the-Trainer program for all new employees and new volunteers. “The Patient Empowerment Network Train-the-Trainer program surpasses the name of the organization,” says Dr. Shegog. “It does more than empower people. It gives them real life tools so they can navigate healthcare through technology.” She plans to ensure that the Digitally Empowered® Course continues to be introduced to every person within their community, whether they are an employee, a volunteer, or a patient. She says a great time for patients to take the Digitally Empowered® Course is during their cancer treatments when they spend a lot of time sitting. Patients can utilize the down time to learn about how to have better health outcomes through understanding technology.

Dr. Shegog speaks from experience. She was diagnosed with cervical cancer 15 years ago. At the time she was in graduate school, was far from her family and support system, and during diagnosis she dealt with the doctor bias that she now works so hard to flush from the system. Eventually she found the right doctor, but the process was difficult and expensive and filled her with self-doubt, and it is what led her to focus on health equity. “I choose to stay on the positive side of things,” she says. “I don’t talk about health disparity; I talk about creating health equity.”

Dr. Shegog earned her master’s and her doctorate degrees in public health with a focus on health promotion, education, and behavior. She also has a graduate certificate in women’s studies, and her bachelor’s degree is in biology, with a molecular emphasis. She also completed a postdoctoral fellowship with the Center of Health Disparities Research at the University of Nevada, Las Vegas. She served on the Lazarex board for more than six years before she joined the staff as the Health Equity and Diversity Coordinator. She is truly an empowered patient advocate empowering patients and advocates.

“The Patient Empowerment Network Train-the-Trainer program surpasses the name of the organization. It does more than empower people. It gives them real life tools so they can navigate healthcare through technology.” – Dr. Marya Shegog, PhD, MPH, CHES, Lazarex Cancer Foundation Health Equity and Diversity Coordinator

Internet Access, Digital Literacy, and Bridging the Digital Divide

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In the modern healthcare era along with navigating COVID-19 infection concerns, Internet service and digital literacy are more important than ever for cancer patients and their loved ones. Telemedicine serves cancer patients with multiple benefits, some of which include protecting them from infection and virus risks, providing easy ways to refill prescriptions, schedule appointments, and view test results; and reducing time, costs, and stress of traveling to and from appointments. 

Internet Access, Digital Literacy, and the Digital Divide

Yet cancer patient advocates must look closely at Internet access, digital literacy, and the digital divide to support more underrepresented patients. A recent National Cancer Institute study of cancer patients and caregivers showed that 90 percent had Internet access, and 82 percent owned a smartphone. While these statistics look promising, there is still more work to be done to help underrepresented patients. Examining results from a recent study of rural cancer survivors reveals a digital divide. Medicare-covered cancer survivors in rural areas had telehealth availability 53 percent of the time compared to 63 percent in urban areas. Rural cancer survivors are also less likely to own desktop computers, laptops, smartphones, or tablets at a rate of 67 percent versus urban cancer survivors at 82 percent. Internet access also needs improvement with Medicare-covered rural cancer survivors at 58 percent access versus 79 percent in urban areas. 

Furthermore, Black and Hispanic survivors had lower technology ownership, with 65 percent of Black survivors and 67 percent of Hispanic survivors owning a desktop computer, laptop, smartphone, or tablet versus 82 percent of white survivors. “Despite the potential of telehealth to meet the unique healthcare needs of cancer survivors (e.g., surveillance, comorbidities, primary and survivorship care), some patient groups face greater barriers to technology access,” the study authors wrote. “These patterned differences in use and access underscore a need to engage multilevel interventions to mitigate the underlying barriers to telehealth use.” 

U.S. Financial Support of Digital Healthcare Access

What can vulnerable cancer patients do to improve their situation if they’re lacking in Internet service or technology literacy? Fortunately, President Biden has put racial equity at center stage of his agenda and is working to end disparities in healthcare access and education. The  Coronavirus Aid, Relief, and Economic Security (CARES) Act helped provide telehealth and connected care services to patients, and the proposed infrastructure bill could help extend support. The U.S. federal government has taken action to help those in need of Internet service or improved Internet service. As part of the Bipartisan Infrastructure Law, President Biden and Vice President Harris operated with Democrats, Republicans, and Independents to create the Affordable Connectivity Program (ACP), as part of the Bipartisan Infrastructure Law. The ACP provides eligible households with a high-speed Internet plan for no more than $30 per month. The Biden-Harris Administration has received commitments from some leading internet providers to offer ACP-eligible families who pair their ACP benefit with one of these plans to receive high-speed Internet at no cost. You can easily check to see if you qualify here.

Digital Literacy Training

For those looking to improve their digital literacy, Patient Empowerment Network can help people build their skills. The PEN digital sherpa® Program and Digitally Empowered® Course help cancer patients (mainly 65 and older) and their families become better prepared for their cancer journey. The goal is for participants to learn to use technology to their advantage and to become more tech-savvy. The program’s workshops help educate patients and care partners in basic Internet and social media skills to help them in their search for information about their illness and support resources for themselves and their families.

University students, known collectively as “sherpas,” have been specially trained by the Patient Empowerment Network to offer technology skills and are paired with program participants. The sherpas empower patients and care partners by training them in skills such as: 

  • Safely navigating online healthcare resources
  • Finding credible online resources
  • Forming online disease support communities
  • Using telemedicine
  • Navigating your health with social media
  • Using rideshare and wellness apps
  • Following and connecting with experts online

The Digitally Empowered Course opens access to a whole new world of knowledge and tools to assist you in researching your condition, asking informed questions, and taking an active role in shared decision-making with your care team. The 10-module Digitally Empowered course trains participants in:

  • How to access the Internet
  • Identifying credible resources and websites
  • The benefits of your patient portal
  • Using social media to connect and learn
  • Navigating your health with mobile devices
  • Apps to use for convenience and fun
  • How to use telemedicine
  • Accessing and joining online support communities

The pandemic brought some issues to light about gaps in Internet service and digital literacy. But vulnerable and underrepresented cancer patients and their loved ones no longer need to remain in that state. They now have options to move them toward becoming empowered and informed. 

Empowered and tech-savvy patients have the ability to build more support for themselves and to build knowledge and confidence. With increased confidence, patients feel more at ease to ask questions when they interact with their healthcare team members. This fortified knowledge and confidence then empowers them to make more informed decisions for optimal health outcomes and improved quality of life for patients. These results make a clear win-win for formerly underrepresented cancer patients and for those who work to support these patients.

Sources

https://mhealthintelligence.com/news/rural-cancer-survivors-report-low-telehealth-availability-internet-access

https://pubmed.ncbi.nlm.nih.gov/34428075/

https://www.whitehouse.gov/getinternet/?utm_source=getinternet.gov

Rx for Community Wellness and Achieving Equitable Care

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Culturally competent whole person care is critical in work to reduce health inequities. The standard of care for underrepresented communities is not enough, treating the whole patient is crucial, in cooperation with existing care. We at Patient Empowerment Network are dedicated to working toward equitable healthcare for all, and our Rx for Community Wellness program has provided another opportunity. Here’s a look at the program, links to content and highlights from panelists and participants. PEN is grateful to our partners Triage Cancer, Leukemia and Lymphoma Society (LLS), CancerGrace and American Urological Association (AUA) for helping to raise awareness of this program.

Importance of Whole Person Care

Whole person care is the patient-centered optimal use of diverse healthcare resources to deliver the physical, behavioral, emotional, and social services required to improve care coordination, well-being, and health outcomes. Whole person care is critical for improving health outcomes because human wellness depends on coordination of multi-dimensional, multi-systemic care. For people with cancer, social, emotional, economic, and environmental conditions impact their health. 

Rx for Community Wellness focuses on conversations between at-risk populations and key health experts resulting in crowdsourced information that can help empower diverse communities and their providers. This information can also help motivate health leaders to understand issues that exist and to push for solutions to overcome them.

Whole Person Care Resources 

The Rx for Community Wellness program focuses on moving toward culturally competent whole person healthcare. Content for this program was crowdsourced from real-life experiences that provided a way for underrepresented patients and community partners to share their experience with whole patient care, both positive and negative with the healthcare system. In an effort to create models for culturally competent whole person care, the learning resource includes meditation and nutrition tools. These tools were created to help empower patients in optimizing their well-being and supporting them in having the best possible cancer treatment outcomes.

The Rx for Community Wellness programs have covered the following topics:

 Wellness Rx Meditative and Nutritional Tools include the following resources:

A crowdsourced resource is also available:

Rx for Community Wellness Program Highlights 

The Rx for Community Wellness program has generated a wealth of information for patients and healthcare providers alike. The information has informed others about inequitable healthcare experiences while also serving to educate and empower patients with whole person care resources.

Aswita Tan-McGrory shared about how pediatric medicine has provided a roadmap to improve adult whole person care. According to Tan-McGrory, “…they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on…because you’re working with kids, you can’t not talk to the parents, not think about what is the school like…so you’re forced to because of that environment, but that’s really a model that we should be using for all of our patients.”

 Dr. Broderick Rodell, a naturopathic doctor and wellness expert, shared advice that he’s found helpful in maintaining his own health and wellness. According to Dr. Rodell, “I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities…”

Mexican American patient Sasha Tanori shared about her experience with inequitable healthcare. According to Sasha, “…where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that. So getting care is…it’s not the easiest. I’ve had to go to several doctors before I even got diagnosed…I had to be sent to San Diego because they had no idea what was going on. They were like, ‘We don’t know what’s wrong with you. Go home.’ They kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican American, they were just like, ‘Oh, if you lose a couple of pounds, you’ll be fine.’”

Dr. Nicole Rochester shared information about one of the impacts of stress on health. According to Dr. Rochester, “…there’s a study specifically looking at prostate cancer by Dr. Burnham, a researcher, and what they found in this study is that they looked at prostate cancer cells from African American patients and white patients. And when they treated these cells with stress hormones, they saw that the Black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy.”

 Dr. Rodell shared his opinion about the U.S. healthcare system and advice for patient advocates, “…if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not going to have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.”

Some program participants provided valuable testimonials about the Rx for Community Wellness programs.

‘I will make more of an effort to get my team members to read information that has been shared on my tests and progress.” – 

“My hematologist is pretty responsive, but I don’t have a holistic doctor, and I’d like to get one. This program definitely raised my awareness of equity issues. Sasha was great explaining her issues. Thank you!”

“THANK YOU for the amazing panel you put together and the moderator (wow!) Perfect representatives from 4 angles/roles = complete and powerful picture/movie.”

How to Take Action for Community Wellness

Valuable advice has emerged from the Rx for Community Wellness program. Anyone with a desire to help can take action to improve care for underrepresented communities. Some recommended actions toward equitable care include:

  • Educate yourself as a patient to work toward better health and wellness. Take advantage of the Rx for Community Wellness resources to help yourself and others who may be struggling with their health.
  • Healthcare providers can read patient experiences to gain an understanding of their points of view and try to do more active listening to make their patients feel heard.
  • Take action to ensure you use wellness practices like exercise, healthy eating, and exercise to decrease stress levels and to maintain a healthy body, mind, and spirit.
  • Use the crowdsourced solutions in the Equity Rx Crowdsourced Resource to learn patient and patient advocate suggestions for more equitable healthcare.
  • If you have an experience to share of when you experienced a health disparity, contact us at question@powerfulpatients.org and let us know what future topics you’d like us to cover.

CSC Arizona Embraces digital sherpa® Train-the-Trainer Program

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When the staff at Cancer Support Community (CSC) Arizona heard about the Patient Empowerment Network (PEN) digital sherpa® Train-the-Trainer program, they knew it was just the kind of programming they were looking for. “We wanted to be able to help the more vulnerable members of our community,” says Caitlin Morrissey, CSC Arizona’s Executive Administrative Coordinator. The goal was to help make things easier for the cancer patients they serve, and Caitlin says that helping patients to navigate things like social media and ride shares, and helping them to connect with loved ones as well as their healthcare providers through PEN’s digital sherpa® program, was a great way to start.

The digital sherpa® program is designed to help cancer patients (who are mainly 65 and older) learn to use technology as a tool to help them through their cancer journey. Patients and their care partners can learn basic internet and social media skills. They can also learn how to access their patient portals and find information and support regarding their illness. Patients can also have their specific technology-related questions answered. Organizations who want to implement the digital sherpa® program can utilize the digital sherpa® Train-the-Trainer program, which is designed to do exactly what it says. The program trains volunteers and other individuals to be trainers, or sherpas, for the digital sherpa® program.

“It’s an amazing program and I’m excited to be a part of it,” says Caitlin who started overseeing the digital sherpa® and the digital sherpa® Train-the-Trainer programs shortly after CSC Arizona adopted them in early December 2021. Despite beginning the program during the busy holiday season and while their offices were still operating remotely due to the pandemic, Caitlin has already seen impactful results. She says participants are relieved and excited when they learn what their devices can do, and they have provided very positive feedback through program surveys. Participant Arcelia Lopez said the program gave her access to a new world.

 

“From the very beginning to the end was an opportunity to have an experience that opened a new world,” Arcelia wrote. “This was a lifesaving experience that I embraced. Everything that was offered and designed was so conducive to learning and building self-confidence.”

Arcelia’s survey responses solidified Caitlin’s passion for the program. “It was amazing to have that feedback from her. It really drives home how important this is,” says Caitlin.

In 2021, organizations like CSC Arizona, that participated in the digital sherpa® Train-the-Trainer program received a $2,500 microgrant from PEN to help offer the program to their communities. CSC Arizona didn’t waste any time putting their microgrant to good use. Director of Operations Kyle Jones recognized that some of their community members didn’t have access to computers or devices, so he purchased several Chromebooks for participants to use for the digital sherpa® workshops. CSC Arizona was also able to give Chromebooks to two individuals, one of which was Arcelia. “Having the gift of the Chromebook changed my life mentally and emotionally and secured my future in having the confidence I needed to maintain my health. It changed me in a way that I didn’t know was possible. It allows me to live in a way that I didn’t know was possible,” wrote Arcelia in response to the program.

Caitlin says that implementing the digital sherpa® Train-the-Trainer program was seamless. She says the program was easy to follow, could be completed online, and didn’t take too much time so they were able to offer help to patients right away. In a short time, CSC Arizona has already used the digital sherpa® Train-the-Trainer program to create a lasting impact in their community. Their fledgling program of trainers includes Caitlin, Kyle Jones, and one outside volunteer. They have offered small group workshops, one-on-one trainings, and have made a house call. Thanks to the online aspects of the program, they were even able to help a patient in Illinois who discovered that they were offering the program and reached out for some help. Going forward Caitlin wants to build the program. She wants to recruit more volunteers and she is already introducing the digital sherpa® program to new patients as they come into CSC Arizona. She looks forward to adding regular group sessions but also continuing to offer the one-on-one sessions to anyone who needs them. Caitlin also has plans to create and offer the digital sherpa® workshops specifically geared toward Spanish speaking participants. “I’m really excited to continue offering it and making it better and better as we go along,” she says.

Caitlin and the rest of team at CSC Arizona are utilizing the digital sherpa® Train-the-Trainer program to empower and make a difference in the lives of the cancer patients they serve. “Every detail is looked at and every detail is considered,” Arcelia noted in her survey. “It creates an opportunity to not allow cancer to win.”

Medicare Doesn’t Cover Free At-Home Covid Tests, But You Still Have Other Options to Attain Free Ones

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The Biden Administration’s new mandate that insurers cover the cost of at-home test did not include beneficiaries of Medicare. This is very unfortunate because Medicare recipients are the largest at-risk population.  

The new mandates that private insurers cover the cost of at-home-test – up to eight per enrollee per month. And, because Medicare enrollees are not participant of this mandate, this leaves many afraid of the consequences.   There are about 63.3 million people enrolled in Medicare and the majority of these beneficiaries, 55.1 million, are age 65 or older, and the rest, though younger, are generally people with disabilities. Many of which may have illnesses that leave them very vulnerable to COVID. 

The mandate which took place on January 15th, means that most consumers with private health coverage can buy at-home test at a store or online and either get it paid for upfront by their insurance company by submitting their insurance card or get reimbursed by submitting a claim to their insurer.  

Fortunately, there are still options for Medicare beneficiaries to get access to free COVID test. 

Here are your options:

  1. You can order four free tests through Covidtest.gov, a new government website that officially launched on January 15th. This site is available to all households not just Medicare beneficiaries. This is for 4 free at-home test per month/per household. Therefore, you may have to reorder every month.  
  2. You can also pick up at-home COVID test for free at Medicare-certified health clinics. 
  3. Community health centers. Be aware that currently demand for the test are outpacing supply, so plan accordingly. 
  4. For Medicare beneficiaries that are enrolled in a Medicare Advantage plan, reach out to your insurer as they may cover the cost of the at-home Covid test. It’s worth a try. The tests may be covered under a supplemental benefit through the insurer, not a required benefit.  
  5. Don’t forget the many testing sites that are offering free Covid testing. Beneficiaries can get the lab-based PCR test, (can take a few days to get back the test results) rapid PCR test, and the rapid antigen test. These sites were really stacked during the Holiday’s, they may be less busy now. A bonus is that many of these sites are drive through, providing you with less exposure to people. 
  6. Additionally, if a doctor or other authorized health-care provider orders the test, there is no cost-sharing. 
  7. Medicare beneficiaries are allowed to get one lab test for free per year without a doctor’s order. 

It hardly seems fair that Medicare beneficiaries have to jump through more hoops to get access to the free tests. However, this is due to the specific legal authority used to implement the directive. 

It seems that for now, this is how it will continue unless there’s another strong push for Medicare recipients to be included in the mandate. At which point It would require congressional action. For now, Don’t Hold Your Breath!! 

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

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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 Does Aggressive Prostate Cancer Impact Various Populations?

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How Does Aggressive Prostate Cancer Impact Various Populations? from Patient Empowerment Network on Vimeo.

How is prostate cancer impact different for some populations? Watch as expert Dr. Yaw Nyame shares how prostate cancer incidence and death rates vary for some groups, potential risk factors, screening recommendations, and actions that can be taken to improve health outcomes.

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Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Transcript:

Sherea Cary: 

What differences do you see in terms of aggressiveness for cancers in different…various populations? 

Dr. Nyame: 

This is an area of research that for me, is trying to understand why certain populations have more aggressive or worse outcomes when it comes to prostate cancer. 

The most obvious example of this here in the United States is for Black men. Black men are more likely to be diagnosed with prostate cancer each year, so about 70 percent more likely to be diagnosed, and they are twice as likely to die from prostate cancer as men of other races in the United States. If you look at what the natural history of prostate cancer and Black men looks like, meaning if you were to chart from diagnosis through the course of the disease, does it look different for Black men? The answer is yes, it appears of Black men get prostate cancer when they’re younger, and there’s data to suggest that perhaps Black men get more aggressive prostate cancer because they’re more likely to progress from the localized or treatable disease to stage IV aggressive disease that can’t be treated. We don’t understand what the drivers of that are for a long time, the medical community has suggested that it’s all biology, and by that may be an inherited biology, but we know that health disparities really carry a significant social contribution. And, in fact, I like to say that social and environmental factors inform biology too. And so, if we see something biologic that explains these trends, it doesn’t mean that that’s the way they were born, it might mean that you put someone in a community that lives near a highway with high pollution or does not have access to clean water or lives in a state of high stress or over security. We don’t know what the biologic manifestations of those types of experiences are, but that perhaps is the reason why we see our communities of color, especially our Black men, are experiencing a higher burden of prostate cancer. 

Sherea Cary: 

So, is there a push to have African American men tested earlier with the PSA test, since it appears that they may get prostate cancer earlier?  

Dr. Nyame: 

The U.S. Preventative Services Task Force, which makes a recommendation to the medical community about prostate cancer screening states that they cannot make a specific recommendation about screening in Black men and other high-risk populations like men with a strong family history of prostate cancer, because those men were not included in the clinical trials that have looked at the efficacy of PSA testing for screening. 

Unfortunately, Black men make up 3 percent or less of participants in the two screening trials that have informed whether there’s a benefit to PSA testing, which there has been shown to be a 20 percent decrease in dying from prostate cancer if you get screened. We recently took data from the screening trials and superimposed them on real-world data from our surveillance apparatus for cancer in the United States, and what we found was that if you did lower the age of screening in Black men from age 55 to 45, that you did decrease the risk of dying from prostate cancer significantly. It is our hope that this type of research will encourage the U.S. Preventative Services Task Force and other medical societies to reconsider their screening recommendation for Black men, ultimately, whatever, if there is a recommendation made to screen at younger ages, I think we need to be conscientious and evaluate what the impact is on the ground, so that if there is a time where we need to reverse a recommendation like that because it’s potentially harmful, that we consider that. But I feel strongly sitting here today that we do need to advocate for earlier screening and Black men. 

Tips for a Telemedicine Visit From a Head and Neck Cancer Expert

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Tips for a Telemedicine Visit From a Head and Neck Cancer Expert from Patient Empowerment Network on Vimeo.

How can head and neck cancer patients prepare for telemedicine visits? Watch as expert Dr. Samantha Tam from Henry Ford Health System shares her tips for telemedicine best practices and tests that can be helpful used in conjunction with virtual care.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So in head and neck cancer, a lot of the virtual visits are mainly based on obtaining a clinical history and having a discussion with your provider verbally as opposed to a lot of physical examination, this is unfortunately the limit of virtual care, and definitely, especially in head and neck cancer, a lot of our examination is through into your ears, into your nose, into your mouth with endoscopic examinations weaved into it, and definitely like CT scans are useful as a modality, as a modality of investigation to have ready prior to your visit with your head and neck cancer provider. Tips that I have for families and for patients that are facing a diagnosis of head and neck cancer before your virtual visit is to make sure that you have any kind of questions that you have written down so that you can make sure that your provider is able to go through each one of these questions to ensure that you have a good understanding of exactly what the next steps are, or what the diagnosis is and what the plan might be moving forward. 

Disparities in Telemedicine Access for Head and Neck Cancer Patients

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Disparities in Telemedicine Access for Head and Neck Cancer Patients from Patient Empowerment Network on Vimeo.

Which head and neck cancer patients have experienced disparities in telemedicine access? Watch as expert Dr. Samantha Tam from Henry Ford Health System explains patient demographics with less access to care and how these disparities can be reduced.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So, during the pandemic, there was a large uptake of virtual care that was pretty unprecedented previously, and a lot of the times patients didn’t have any other options aside from accessing care through telemedicine because of the precautions that were taken within institutions in limiting in-person care. With this, we saw that there was a very specific demographic that we’re able to access telemedicine, and there were some patients that potentially could have been left behind. These patients are usually patients that have lower SES (socioeconomic status) indicators such as lower median household income, or perhaps lack of insurance coverage and the difficulty, especially in head and neck cancer, is that a lot of the times, these are the same patients that are at highest risk for head and neck cancers or have the highest needs in head and cancer. And certainly understanding who these patients are is extremely important, so that we ensure that we have equitable delivery of health care to these patients, and we don’t utilize these platforms that put these patients that are already at a disadvantage at more of a disadvantage.  

How Can Lung Cancer Patients Ensure Quality Care No Matter Location?

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How Can Lung Cancer Patients Ensure Quality Care No Matter Location? from Patient Empowerment Network on Vimeo.

Now that lung cancer patients have access to in-person and telemedicine visits, how can they ensure quality care no matter location? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya share their advice on maximum travel times to in-person providers, when telemedicine visits make sense, and how to ensure you get the best fit for you as a patient. 

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Transcript:

Dr. Nicole Rochester: 

You mentioned telehealth, and we know that one of the barriers to receiving care, and you’ve indicated that in terms of having access to a multi-disciplinary team, having access to thoracic surgeons as opposed to general surgeons. So, we know that that is impacted by where we live, and that often our geographic location can actually be a barrier to the receipt of quality care, so I’d love for you to just talk a little bit about how patients who may be in more remote locations can make sure that they are also receiving appropriate care for their lung cancer. 

Dr. Olugbenga Okusanya: 

Yeah, I think this is a very substantive challenge, I think this is one of the holes in healthcare, there are these regions in the country where you just are not going to have access to any number of surgical sub-specialists or radiation oncologists, or lung cancer specific oncologists. I think that is a really big challenge. I think we have actually learned through the pandemic that the physical barriers really are not the reason to not get the best care, so I think those patients should be exquisitely interested in telehealth and in phone calls, and I think most healthcare systems now, because the reimbursements have been approved for telehealth and actually now built infrastructure to support it as an ongoing concept. So now, if you are a patient that’s in Arizona and you want to talk to a doctor who’s in New Jersey, you can do that, you can make that happen. If you find someone, you Google them, you find a friend in that area who knows someone, you can call their office and say, “I want to have a telehealth visit.” And as long as you have broadband Internet and a phone, you can do it. You can have that conversation. 

So, I would advocate for people to really make sure that you at least feel like people in the sort of local regional area that you can perhaps get to maybe two, three hours away. But you can imagine a scenario where you can get there, you can try and establish some level of care and some level of rapport with them. I think that’s something that has really opened, has been one of the few good things to come out of the pandemic. 

Dr. Nicole Rochester: 

I was going to say the exact same thing. That is one…there haven’t been a lot of positive things, but that certainly is one of the positive outcomes of the pandemic, is this surge, and it’s not that we already had the capability, but it certainly was not being used to its maximum capacity. I appreciate that. So, speaking of telemedicine and COVID, I think one of the challenges that patients and often care partners have is understanding when is a telemedicine or telehealth visit appropriate versus when do you actually need to go see that doctor in-person, so…can you help clarify that? 

Dr. Olugbenga Okusanya: 

Yeah, so I think in general, even if you start with the telehealth is, I think there’s very little downside to telehealth for almost anyone in general, because a lot of the information can be garnered from the patient record, from their scans. I think in general; it gives you 85 percent of what you need out of that interaction, and it may be more convenient for the patient, a lot of times it’s actually more convenient for the doctors, doctors have now found ways to work from home. They do have to have their clinic from home, it’s a much more relaxed environment than more efficient. I think there are times like for instance, I have to make decisions about offering surgery to patients who I consider to be moderate or high risk, I think there is a benefit and having that patient come and see me in the office because they have to somehow pass what we call the eyeball test, and that is a little bit of where this disparity comes in in lung cancer surgery, because it depends on whose eyeball is looking at you, making your determination about what they think is going to happen with you in surgery. 

I remember…actually one of my favorite patients ever. She had data that did not look like she would tolerate surgery, everything about her data did not look favorable. And I saw her, I remember seeing her in-person, and you could see the spark in her eye and energy that she had, and I said, “You know what, we’re going to do it.” And she did great, she did phenomenally well. And that is a case where if you’re in the population of patients that may be slightly more moderate, slightly more high-risk, and you need someone to really look you in the eye and you say, “I’m going to do what it takes to get through this.” I think that’s the patient where the in-touch, in-person visit really is that extra touch that can be benefited. 

Dr. Nicole Rochester: 

Wow, I love what you said about the spark in her eye and also how you connected that to health disparities, and I don’t know the race or ethnicity of the patient that you’re describing, but we certainly know that that makes a difference, and I just wonder if that had been a different physician, would they have seen that same spark? And I think it just goes back to what we were talking about earlier, and the importance of finding a physician or health care provider with whom you connect, someone that actually respects you, someone that listens to you and sees you as a whole person. So, the fact that you were willing to go beyond that data on her chart, which screamed, This is a poor surgical candidate, met her in-person, and something about her let you know that she was going to be okay. 

Dr. Olugbenga Okusanya: 

And that’s why in medicine and surgery are still art at the end of the day, it’s still an art. You make decisions, best informed decisions, but there’s a lot of it that is still really special and mystical in a way. And I think having that in-person interactions will let you practice that and it’s exactly what you said, you want to have a really nice relationship with the physician, especially anyone that’s going to be doing anything that might be invasive or dangerous because for the most part, you meet someone for 45 minutes and then you sign up for what could be a life-threatening event. So, you, the physician and the patient should feel really good about that interaction and whatever that energy is, it’s really important, it’s a little bit kind of sacred, I think, and I think it’s really valuable to invest in that if you don’t like the surgeon, you really don’t feel like it’s a good fit or you don’t like your oncologist, find someone else. You’ll do better in the long run, for sure. 

Dr. Nicole Rochester: 

That is so incredibly important. I agree, 100 percent. So much of healing is beyond just the nuts and bolts of the medical care that we provide, or in your case, the surgical care, there’s so much more to that, that’s not really well studied, but that relationship and that connection is key. 

Dr. Olugbenga Okusanya: 

Critical, and that’s not to say that necessarily the person has to be like the warmest, friendliest, the most fun person you ever met, some people prefer a more yes ma’am, no ma’am, clear-cut, well-defined boundaries of a relationship. Some people prefer a big hug and a laugh and a joke. So if you’re getting what you need, that’s exactly what you need. And if you’re not getting what you need, you should think about your other options 

How Can BIPOC Lung Cancer Patients Guard Against Health Inequities?

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How Can BIPOC Lung Cancer Patients Guard Against Health Inequities? from Patient Empowerment Network on Vimeo.

How can BIPOC lung cancer patients guard against health inequities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya share advice for questions to ask your doctor and ways to ensure optimal lung cancer care. 

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Transcript:

Dr. Nicole Rochester:

What are some things that patients of color can do in order to protect themselves from these inequities that you’ve talked about, starting with diagnosis and treatment, what can we do? What can patients of color do? 

Dr. Olugbenga Okusanya: 

So, I think the number one thing is to ask questions, the number one thing is to say, what are my options? What am I dealing with? What should I do or what shouldn’t I do? And to really make sure you get the most at that time when you see a physician, because that is really what we’re there for apart from the surgery, I’m really there to be an educator. I teach as much as I operate on a daily basis whether it be the medical training is whether in my patients, my job is to communicate information back and forth, so you really want to spend the time asking questions and getting as much information out, as much as you can. Number two is, see a specialist. There’s also very good data to indicate that as a Black patient, if you see a board-certified thoracic surgeon, you are more likely to get lung cancer surgery than if you were to see a surgeon of unknown specialization, a general surgeon. So clearly the training gives specialist the ability to make finer determinations and discernments that I think in large part favor Black and minority patients, so you want to find someone who deals with these disease processes all the time because they’re going to look at it in a much higher level and look at it with a lot more granularity. 

Dr. Nicole Rochester:

Just have to repeat what you said, you said, I teach as much as I operate. That just really resonated with me, and I think that…that’s so incredibly important. Doctor means teacher, right? I think that’s the Latin…we are obligated to teach our patients, so I just really appreciate that that’s something that you incorporate in your daily practice.  

BIPOC Lung Cancer Patients and Health Disparities

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BIPOC Lung Cancer Patients and Health Disparities from Patient Empowerment Network on Vimeo.

What do some BIPOC lung cancer patients experience in terms of health disparities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya explain health disparities at the different stages of lung cancer diagnosis and treatment – and note differences in diagnosis and survival statistics. 

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Transcript:

Dr. Nicole Rochester: 

So I want to talk about racial and health disparities, ethnic and health disparities, specifically in lung cancer care. I know that you have done some research in this area, and certainly being a person of color, this is something that I would imagine you relate to, so we know that the CDC and many other healthcare organizations have now declared racism a public health crisis, and certainly in 2021, we continue to see worse outcomes for cancer and many other chronic illnesses in people of color, so I’m curious, what do you think are the notable health disparities that are consistently seen in treating BIPOC patients living with lung cancer?  

Dr. Olugbenga Okusanya: 

Yeah, unfortunately, this is an area of interest of mine. And it turns out that the disparities are literally every single stage, there’s not an aspect of lung cancer care, which there is not a significant disparity that hinders the ability of minority patients to get better care, period at all stages. So overall survival for lung cancer for Black patients is worse than white patients, even though Black patients get diagnosed on average two to three years younger than their white counterparts. Black patients are less likely to get surgical therapy for early-stage disease, which is the actual care for an early-stage disease dates than Black patients, than white patients, that gap has been narrowing over the last 20 years, but it is by no means closed. Black patients are unfortunately less likely to get an appropriate work-up to get the indicated tests. They are also less likely to get the chemotherapy when it is indicated, and they are less likely to be enrolled in clinical trials. So, literally at every step there is a significant inequity that affects Black patients, and I think it’s really disheartening to see in a field where lung cancer is the most common killer and cancer, and frankly, there are lot    s and lots of patients who have options, who have good options that never get investigated and never get delivered. 

Dr. Nicole Rochester: 

That is extremely heartbreaking, and it’s sad to hear that we see the same disparities in lung cancer that we see with every other chronic condition, with every other cancer, certainly what we’ve seen recently with COVID-19 as well. And it really underscores what you said previously, which is the importance of being an advocate for yourself and doing your research and making sure that you really are getting the best care.

What Are the Barriers to Lung Cancer Care?

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What Are the Barriers to Lung Cancer Care? from Patient Empowerment Network on Vimeo.

 What are some barriers to lung cancer care? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya discuss factors that impact lung cancer care and some ways that care access can be improved for better care. 

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Transcript:

Dr. Nicole Rochester: 

We know that there are many factors that can negatively impact outcomes for patients and families facing a lung cancer diagnosis, including things like social stigma for smoking, geographic location, socioeconomic status, insurance and access to care, financial hardships and access to transportation. So, my question to you, Dr. Okusanya is, what are some of the barriers that both lung cancer patients and their care partners face when they are seeking care? 

Dr. Olugbenga Okusanya: 

First of all, thank you very much for putting a spotlight on lung cancer care, we really need more people to help us treat this really terrible disease. 

There are a number of barriers for our patients in order to get the best care possible. Number one, we actually find this diagnosis, we find that a lot of patients, have long nodules that have been seen because maybe they got a chest X-ray or a CAT scan for some other reason, and maybe they don’t get followed up on because they don’t have a steady source of healthcare, they don’t have a PCP or someone who regularly follows up on their health information. We have trouble also sometimes getting patients in the appropriate diagnostic studies that they need, oftentimes, we find patients that may show up in the hospital that have a significant problem and they may need a special kind of CAT scan or a biopsy, and they simply do not have the resources to get to said CAT scan or get to said biopsy, which is critical in making the appropriate diagnosis so we can get them to the right therapy. One of the biggest things that you mentioned is finding a specialist in terms of all aspects of lung cancer care, whether it is surgery, medical oncology, or radiation oncology, there are medical practitioners that mostly specialize in lung cancer care, and because of that, they’re going to have access to different resources, they’re going to think differently about the disease process and they’re going to approach each patient differently because of the disease process. So, finding someone who really thinks and works in the lung cancer space all the time, I think it’s a barrier to patients getting really good care. 

We also find that one, cancer care has a lot of hurdles, apart from proper CAT scans, biopsies, work-ups, actual interventions, there are a lot of steps that patients have to go, to get from even just getting a diagnosis to getting treatment and having patients move through that period of time, which is we hope usually four to six weeks in a sort of step-by-step manner can be extremely eliminating. So we really are trying to condense those things so patients can meet all the specialists, they need to get all the tests that they need to get in maybe one or two concise visits and then get into care, and lastly, as you mentioned, not having access to what we call multidisciplinary conferences is a limitation because there are more and more nuanced ways that lung cancer is presenting and being treated, that needs to be discussed between a surgeon and radiation oncologists and the medical oncologists, preferably all in the same setting, all at the same time. So having access to those clinics where we can have a really high-level discussion about the best thing to do for a patient, I feel is a significant barrier, especially for our patients with advanced disease 

How Can BIPOC Prostate Cancer Patients Protect Themselves Against Care Inequities?

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How Can BIPOC Prostate Cancer Patients Protect Themselves Against Care Inequities? from Patient Empowerment Network on Vimeo. 

How can BIPOC prostate cancer patients help protect themselves against care inequities? Host Dr. Nicole Rochester and Dr. Yaw Nyame share their perspectives about factors that work against equitable care for some BIPOC patients – and how patients and providers can work toward improving care for better health outcomes.

See More From Best Prostate Cancer Care No Matter Where You Live

Related Resources:

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care?

Transcript:

Dr. Nicole Rochester: 

We know that there are as with every other type of cancer and every other disease, there are significant health disparities with BIPOC patients. And so, Dr. Nyame, I’d love for you to talk about specifically with prostate cancer, some of the disparities that you see in your practice and in your research, and then what are some things that patients of color can do to protect themselves from these inequities? 

Dr. Nyame: 

This is a very important topic for me, it’s something that I am very passionate about, and as Dr. Grivas alluded to, I am doing a lot of research on, and I think the statistics are so grey. Black men are 80 percent more likely to be diagnosed with prostate cancer. So the average man in the United States has a one and nine lifetime risk of being diagnosed with prostate cancer, that’s probably one in six or one in seven Black men. Black men are twice as likely to die from prostate cancer compared to men of other races and ethnicities in the United States, and a lot of this is driven by the social milieu and factors that we’ve talked about today. What troubles me is when we talk about these statistics, I fear that that in of itself is crippling for some Black men, “If I have this diagnosis, and I’m not going to do well. Why should I do anything?” And I can tell you that the literature and all the research that we do, and it gets refreshed every 10 years or so, someone will do the study and it shows that if we have Black men and men of other races or white men, and we give them the same treatment for the same level of disease, that the outcomes are actually very similar. And a better way to state that for me is if you’re diagnosed early and you get the treatment that you should get irrespective of your race, it seems like outcomes can be quite good. 

And so, a lot of what we see with regards to prostate cancer inequities are driven by lower treatment rates and probably an impact of lower quality care. And when I say that, what does that mean? Well, do you get your care at places like the Seattle Cancer Care Alliance or the Cleveland Clinic, or Johns Hopkins or MD Anderson, where you have providers who are expert and do a lot of prostate cancer care, or are you being seen by someone in the community who I guarantee is an excellent clinician, but doesn’t have the same resources and the same expertise, in the sense of being focused on one disease process or one set of cancers? For instance, we are genitourinary cancer specialists, a fancy term for being cancer doctors of the plumbing system. But because that’s all we focus on, we know a lot about the process, we know what works, and we know what the standards of care. So, I think when you can get the right treatment at the right time, and you can get it from teams that are really specialized in this, that our outcomes are going to not care about what your self-defined race is when you check the box. 

The problem is, how do we get…how do we close that gap that exists currently that doesn’t allow people to get that care, and I think we’ve talked about rurality, so I think…I grew up in Oklahoma, and I could see that if you are in the sticks in Oklahoma and you’re not near a cancer center, like something down in Dallas, that your care might be impacted, but…especially if you have to travel a lot and it’s expensive. But we have major U.S. cities like Los Angeles where you may share a ZIP code with a millionaire but use very different health services. So, it’s not always a reflection of how far you have to travel, but it also is factors about how welcoming institutions that provide high quality care can feel for populations like our BIPOC populations who sometimes have been the subject of medical experimentation and lower quality care sometimes because they might not get shuttled to the same services historically. And I think we have a lot to undo to rebuild the trust that is required to have Black men not be fearful of seeking care from us, but be trusting.