Tag Archive for: health equity

Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

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Expert Perspective | Aggressive Prostate Cancer Research and Health Equity from Patient Empowerment Network on Vimeo.

What does research show about aggressive prostate cancer and health equity? Expert Dr. Ronald Chen from KU Medical Center discusses advanced prostate cancer research findings, the INNOVATE trial, and advanced prostate cancer disparities.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

 Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

 How Can Prostate Cancer Screening Access Be Increased?

How Can Prostate Cancer Screening Access Be Increased?

Transcript:

Lisa Hatfield:

Dr. Chen, can you provide an overview of your research focus around improving treatments and cure rates for patients facing an aggressive prostate cancer diagnosis? And also, two parts to this question. What inspired you to focus on the topic of health equity in relation to prostate cancer?

Dr. Ronald Chen:

Well, in terms of thinking about my research on improving treatments for advanced prostate cancer, and I’ll just define that to say, advanced prostate cancer, we usually think of as patients who have prostate cancer that has spread to other parts of the body. And so that’s often very aggressive. And, of course, in that situation, there’s still a lot of room for us to improve treatment so we can extend the survival and also improve the quality of life for these patients as much as we can. So a lot of room for improvement. And really, I think how we get to that improvement is mostly through clinical trials.

There’s a lot of promising new treatments that are more effective in tackling the cancer that also potentially can improve the patient’s quality of life, which is also a very important situation for advanced prostate cancer. And so a lot of my research really focuses on clinical trials to incorporate new treatments or new ways to do treatment for patients with advanced prostate cancer.

I’ll give one example. I lead a national trial that’s sponsored by the National Cancer Institute. It’s called NRG-GU008. We call it the INNOVATE trial. And this trial is specifically for patients who have prostate cancer that has spread to the lymph nodes. And if you have prostate cancer that has spread to the lymph nodes, that’s technically stage IV. And we, again, don’t do as well as we want to for these patients. And what this trial is testing is standard of care which would involve radiation and hormone therapy compared to standard of care, radiation/hormone therapy, plus a new drug that seems to hold promise for prostate cancer.

And, of course, we’re testing to see whether adding this new drug would reduce further spread of the cancer, improve survival, and how it impacts quality of life. And so, that’s a very important effort for no positive prostate cancer patients. And we are trying to enroll almost 600 patients, and so far we’re about 200 patients into it. So it’s an ongoing trial. It’s open across the country. And I really do hope that at the end of this trial, we’ll be able to offer a new option for these patients.

I’m involved in other trials around the country that are testing other treatments for advanced prostate cancer. And a lot of my focus on these other trials is also to sort of assess the impact of these treatments on the patient’s quality of life. I think quality of life is really important. We don’t just want to focus on being more aggressive and more aggressive and more aggressive without accounting for how the aggressive treatment really impacts a patient, how their quality of life is and side effects. And so that’s also another really important focus of my research and clinical trials.

In terms of my focus on health equity, health equity is a really important topic because even though we have pretty good treatment for prostate cancer, we know that not all patients have the same access to treatment, and not all patients have the same outcome with advanced prostate cancer. And so, studying why there is a disparity where some patient groups don’t do as well. We know for a fact that based on multiple studies, that Black patients with prostate cancer are more likely to die from prostate cancer twice as much as white patients with prostate cancer.

So we want to understand why, and once we understand why, we want to design interventions to reduce that gap, so then all patients have the same access and have good outcomes with this disease. And so I think that relates to access to screening. So we can diagnose cancer as early as we can. It relates to access to clinical trials, and that’s another really important aspect of my research focus.

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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.

Expert Advice | Shining a Light on Equitable AML Care

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Expert Advice | Shining a Light on Equitable AML Care from Patient Empowerment Network on Vimeo.

While treatment options are improving, there are still many factors impacting equitable care for AML patients. Dr. Ann-Kathrin Eisfeld shares advice for improving research and clinical trials for underserved AML populations.

Dr. Ann-Kathrin Eisfeld is Director of the Clara D. Bloomfield Center for Leukemia Outcomes Research at The Ohio State University and a member of the Leukemia Research Program at the OSUCCC – James. Learn more about Dr. Eisfeld.

See More From INSIST! AML

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Advances in AML Research _ Where Do Clinical Trials Fit In

Advances in AML Research: Where Do Clinical Trials Fit In?

 What Is the Purpose of AML Genetic Testing

What is the Purpose of AML Genetic Testing?

 How Does the Presence of Molecular Markers Affect AML Care

How Does the Presence of Molecular Testing Affect AML Care?

Transcript:

Katherine Banwell:

Dr. Eisfeld, we’ve covered a lot of information related to AML care. As a researcher, what other topics are currently top of mind for you in the field of AML? What are you passionate about? 

Dr. Eisfeld:

Again, so many parts. I think there are probably three main things that I’d like to name. And I think about it as a little bit outside the box. Most of what we know about AML, we have become so much better. It’s because we have been studying patients who were treated over the past decades on clinical trials and very often here in the U.S. or in Europe.  

But all clinical trials have a bias in that most of them have been done A) on patients who are younger than the age of 60. And B) fewer patients of other races and ethnicities included. And had patients not included that have AML, for example, not only in the bone marrow but on extramedullary sites – how we call it – up to 10 percent of their patients. And also, very often have not been done on very old patients where the AML is very common. So, all the patients – patients from other race, ethnicities, or underrepresented minorities, and patients who present with extramedullary disease are currently in my – underserved.  

And these are exciting areas and opportunities of research and of active clinical practice. Because those are the patients we need to include if it’s possible now to include them in clinical trials. 

If there are no trials available, then make sure any other additional molecular testing it done to understand them better and to advance our disease knowledge that we make sure that we can give the best possible care.  

I think that the most important part is to get the molecular testing, and to enroll into clinical trials, and then to very often biobanking.  

Why am I saying that is because our knowledge AML comes from patients who donated some tissue so that we could learn – researchers decades ago could learn about the genes. We know that leukemias differ so much in between patients.  

So, I am worried that we are yet missing out on potentially important genes that need to be discovered and where we could develop docs for. This will only be possible with these additional testing. 

 The second part is to really consider going to larger treatment and larger treatment cancer center. And there are support systems in case that can help in here.  

And the third part is to get involved even as early as possible even if you’re not personally affected, with Be The Match – with bone marrow transplant because there’s a paucity of donors, of people of color that makes it harder for these patients to get a potentially curative treatment in here.  

We have other options now in bone marrow transplant where one can use only half-matching donors and or other availabilities. But again, that doesn’t outweigh that the bone marrow and donor registry that we need to get better at.  

And I can – there are just so many factors – such a high degree of structural racism that affects people from every corner. And I think we as physicians, as society, and everybody need to acknowledge that. And we have to make sure that we get better to, again, give every patient the best care and keep the patient in mind and see what’s right for them at the right moment.    

Katherine Banwell:

Where can patients or people who are interested find out about being a donor? 

Dr. Eisfeld:

There is the website called “Be the Match” that one can put in. This is probably the best way to get first information.  

And usually, at all the cancer sites. And sometimes, there is information at lab donation places, universities, either or the American Red Cross. Usually those places have information laid out there as well. 

A Breast Cancer Expert’s Hope for the Future of Care

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A Breast Cancer Expert’s Hope for the Future of Care/a> from Patient Empowerment Network on Vimeo.

Is the future of breast cancer care hopeful? Expert Dr. Bhuvaneswari Ramaswamy shares encouraging research advances and discusses specific areas in need of improvement for all breast cancer patients.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about this expert here.

See More from Thrive Breast Cancer

Related Resources:

What Role Do Breast Cancer Patients Play in Care and Treatment Decisions?

 Thriving With Breast Cancer Tools for Navigating Care and Treatment

 Why Should Breast Cancer Patients Feel Empowered to Speak Up About Their Care?

Transcript:

Katherine:

Well, to close out our conversation, Dr. Ramaswamy, I’d like to get your thoughts on where we stand with research progress. Are you hopeful?

Dr. Ramaswamy:   

Extraordinarily hopeful. I mean, and I say this like I even said before, some of the things I was skeptical about. I have to pull back my skepticism, which I’m very, very happy about. The role of immunotherapy starting to come into breast cancer, newer drugs, oh my God, therapeutics has improved our understanding of how to prevent these cancers. Picking up those high-risk patients, looking at these liquid biopsies, our understanding of genomics and precision oncology, I just have so much hopes. Management of brain mats with radiation treatments that are so targeted, improving, reducing, or mitigating the side effects with the treat – with the less treatments for those patients who have less risk. I mean, in every possible way, we are improving the way – what we are doing. Can we do better? Particularly in some areas I do want to bring it out. I think we still lag behind in health equity.

I think still a in African American patients with the breast cancer has a higher risk of dying from breast cancer. We haven’t really impacted it as well as we can do. I think understanding the ancestry, understanding the risk, understanding the lifestyle behaviors that increases the risk of these aggressive  cancers, say in African American women and in and those are very, very important. Prevention is so much better than cure, right? So, I think a little bit better of our understanding on prevention and the liquidity. Both access and understanding the biology and treatment. Improving our clinical trial approvals. We still only even in the best cancer centers, we only approve 25 percent of our patients, 15 to 25 percent of our patients into cancer clinical trials. And look at the changes we’ve had.

But imagine if we can put 50 percent of our patients on clinical trials, we’ll double the progress because without those clinical trials, none of these drugs can be approved.

Katherine:                     

Yeah.

Dr. Ramaswamy:          

So, what is today in a clinical trial is what is a tomorrow-approved drug. So, our understanding and talking about that becomes very very important for us. And then I think lastly, there are some breast cancers like invasive lobular cancers that are only 15 percent that we still don’t understand as well. And so there are some more little pockets that   I think we still need to understand. Male breast cancers are slightly starting to increase. We need to improve. So, there are areas we can do better, but overall, it’s absolute promising and very, very happy today. Our research is going really well, so, and it’s impacting patients’ outcomes.

Dr. Leigh Boehmer: Why Is It Important for You to Empower Patients?

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Dr. Leigh Boehmer: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can healthcare providers help with patient empowerment? Expert Dr. Leigh Boehmer from Association of Community Cancer Centers (ACCC) shares her perspective about patient empowerment and methods they have used at ACCC to help empower patients.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

 Dr. Heather Wakelee: Why Is It Important for You to Empower Lung Cancer Patients?

Transcript:

Dr. Leigh Boehmer:

At ACCC, we’ve made a commitment to including patients and patient advocates in all of our ongoing educational initiatives, we no longer want to create or disseminate resources that weren’t first designed and vetted within communities for which they’re being built, and we also believe in rooting all of our work in health equity. Because all people deserve to be offered safe and effective cancer care, and I think…I feel so passionate about patient empowerment because I identify as a cancer survivor myself, I have my own patient story, and, unfortunately, cancer has touched the lives of so many across the globe, and so I advocate for recognizing patients and caregivers as vital components of any care delivery team, and I  think it’s so critical because to be honest, we’re always going to be stronger together.

Health Equity: Accessing Quality MPN Care and Clinical Trials

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Health Equity: Accessing Quality MPN Care and Clinical Trials from Patient Empowerment Network on Vimeo.

How can health equity be addressed in MPN care? Dr. Angela Fleischman discusses the importance of clinical trial diversity and ways to help provide equitable MPN care for all patients.

Dr. Angela Fleischman is a physician scientist and assistant professor in the Department of Medicine at the University of California, Irvine. Learn more about Dr. Fleischman.

See More From MPN Clinical Trials 201

Related Programs:

Advancing MPN Research: How Clinical Trials Work

Advancing MPN Research: How Clinical Trials Work

 MPN Clinical Trial Safety, What Are the Protocols?

MPN Clinical Trial Safety, What Are the Protocols?

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How Can You Access an MPN Clinical Trial?

Transcript:

Katherine:

Based on American history, some people believe that they won’t receive equitable or safe care if they participate in a trial.  

How can you reassure those people who are concerned they’ll be treated fairly? 

Dr. Fleischman:

Now, I think that this is a very important point, and something that there’s been a lot of emphasis, to try to improve diversity in clinical trials, because our American population is quite diverse. However, the participants that, in general, participate in clinical trials are, unfortunately, still have not a very diverse population in our clinical trials. 

I think what we need to first start doing is education, to reach out to underrepresented communities, to start to build the trust amongst these communities, to tell them about the value of clinical trials. And I think it’s going to take some time to build trust first, because it does take quite a bit of trust to participate in the clinical trial. 

But I don’t have a great answer for that, other than, we need to work hard to, first, build trust, and then, I think the diversity will come. 

Katherine:

Mm-hmm. How does holding on to some of these beliefs lead to limitations in care and create disparities? 

Dr. Fleischman:

So, and rightfully so, if a patient is scared, or has some reservations of participating in a clinical trial, they may – that’s offered to them, that they provide them with, potentially, something better than standard of care. They may be missing out on a potential opportunity. 

Also, potentially, if a patient, if they’re asked about a clinical trial and they have a negative connotation about them, they may lose trust with their physician, if they say, oh, my physician is asking me to participate in a clinical trial.  

I think it all boils down to trust, and as physicians, we need to demonstrate that we are worthy of the patient’s trust, and we really are ingrained in us to treat every patient the same. I mean, that’s what our oath is. That’s what we’re supposed to do, and I think that the vast majority of patients, they have, ethically, are treating patients exactly the same, regardless of their circumstances.  

Katherine:

Health equity means that no matter what a patient’s circumstances, whether it be race, income issues, lack of education, that they should have access to the best care. What is being done by the medical community to address this issue?  

Dr. Fleischman:

So, yes, this is a significant issue, and in particular, with myeloproliferative neoplasms, in whom there are lots of oral drugs – or with interferons, it’s injectable, but you get the prescription, and you give it to yourself – that there can be quite high copays, in some cases, exorbitant amounts, which, really, are not able to be paid for by the vast majority of people. 

So, many companies do have copay assistance programs. Also, foundations have copay assistance programs. So, I think that is, at least, one step in trying to make things more equitable, to get people who need a drug, their drug, at a very reasonable cost. Again, it does take some time, some legwork on the part of the patient, to seek out these programs, or to find an advocate for themselves to seek out these programs for them.  

Is Whole Patient Care a Path to Health Equity?

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As part of our Patient Empowerment Network (PEN) Path to Empowerment, whole patient support is included in the path for patients. Our advocacy program called Rx for Community Wellness focuses on culturally competent whole person healthcare that treats the whole patient in tandem with existing care while also looking at health equity issues. As we prepare to launch into another series of Wellness Rx Meditation and Wellness Rx Nutrition programs, here’s a look at the programs and resources that are already available. The intention of these resources are to improve cancer care for all patients by providing meaningful mind-body tools that maximize well-being.

Equity Rx Webinars 

Unfortunately, not every patient is starting from the same level in their healthcare. Health equity topics must be addressed to achieve equitable care for all, and the Equity Rx webinar series have provided an opportunity to address some of these issues. In the Equity Rx webinars, we pulled together a panel that included a cancer survivor, a naturopathic doctor, and a public health scientist. The panel members discussed the importance of culturally competent whole person cancer care to work toward improved cancer outcomes for all patients. Some of the topics covered in the Equity Rx webinars include: 

  • Ways that healthcare systems can better work toward whole person care
  • Solutions to help overcome trauma and lack of trust to work toward healing
  • Advice from a cancer survivor on how to work toward optimal patient care
  • The effects of stress, anxiety, and depression on physical health
  • How environmental conditions and personal experiences can impact health
  • Existing barriers to diagnosis and a patient’s experience as a Mexican American
  • Barriers to culturally competent care and how to address barrier issues
  • Factors that whole person care examines and obstacles healthcare systems   pose to patient care

Survey feedback about the Equity Rx and Wellness Rx Meditative and Nutritional Tools have been extremely positive with 90.2% of survey respondents believing this program has given them a better understanding of the need for health equity. As more people become aware of health equity issues, they can also advocate on behalf of others to improve care for all patients. 

In addition, 82.7% of survey respondents agreed they are very likely to share their story with others to raise awareness about the need for equitable care after the Equity Rx program. And through the process of sharing their personal experiences, patients can not only help educate others but may also be able to work through some of the emotional load of their cancer journeys.

One survey respondent also came away from the programs with motivation to add holistic care to part of their care team.

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!

Another survey respondent shared how the programs instilled motivation to take a more active role in their care.

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

Equity Rx Crowdsourced Resource Guide

PEN recognizes the value of educational resources and in gathering input from a wide selection of people – whether they are patients, care partners, or patient advocates. In the printable and downloadable Equity Rx Crowdsourced Resource Guide, whole person care is described with an explanation of why whole person care is important in improving health outcomes for all patients. Equity Rx survey highlights are also shown in easy-to-read graphics in the resource guide along with crowdsourced solutions for working toward equitable healthcare.

Is Whole Patient Care a Path to Health Equity?

Wellness Rx Meditative and Nutritional Tools

Whole person care is a primary tenet of holistic medicine, and nutrition and meditation practices are two ways to incorporate holistic care. Holistic care is one way that can support patients in maintaining healthy minds and bodies. In the Wellness Rx Meditative and Nutritional Tools, we created educational videos and transcripts to improve knowledge about meditation practices and nutrition to boost patient health. Meditation topics that were covered in the series include breathing, abdominal breath, chest breathing, body parts, body scan, complete breathing, joy, whole body, heart center, and breath counting. While nutrition topics covered in the series include the benefits of vitamins, minerals, carbohydrates, fats, protein, and plant-based diets. 

Access to health and wellness options are vital for all patients. We at PEN hope you can take advantage of the Rx for Community Wellness program resources and also share them with others to improve their care. Additional webinars and resources will be coming soon to help patients and care partners move toward improved empowerment, care, and support for their cancer journeys.

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

What Are the Unmet Needs in Access to MPN Care?

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What Are the Unmet Needs in Access to MPN Care? from Patient Empowerment Network on Vimeo.

Which areas of MPN care still need improvements to access? MPN expert Dr. Claire Harrison from Guy’s and St. Thomas’ Hospital in London explains patients who still experience barriers to care and what can be done to reduce access issues.

See More from Best MPN Care No Matter Where You Live

Related Resources:

How Can MPN Patients Stay Up to Date With New Treatments?

 MPN Treatment Strategies for Patients Who Have Failed Traditional Therapies

 Advice for Hesitant MPN Clinical Trial Participants

Transcript:

Dr. Nicole Rochester: 

What would you say are the unmet needs in access related to MPN and care, specifically as it relates to clinical trials, and what can we do to address those unmet needs?

Dr. Claire Harrison: 

Well, I think there is a problem with rare diseases in terms of geographical access to trials, and we often find patients have to travel a long way. I know that’s true in North America as well as in Europe. And we’re very lucky in our geographical locations, but in some parts of the world, some companies or doing not open clinical trials, so I think there’s an access issue. 

I think also there is something about patients have to meet rigid entry criteria for clinical trials, and so oftentimes in myelofibrosis, for example, commonly patients who fail ruxolitinib (Jakafi) have a lower platelet count, and that is often an exclusion criteria. Those criteria are there to try to get a uniform population of patients in a trial, but it can feel like you’re excluded as a patient, and it can feel very tough and for your health care team that we can’t include you in a clinical trial. We also have to remember that it is there for safety purposes, so if there is a lower limit for platelet count, that’s often because the drug might affect platelet count. It is really important that we have a broad spectrum of trials available and that we try to increase the availability of trials for patients. 

I also want to say a word about inequality of access and thinking about accessing some different ethnicity, so often non-white MPN patients are under-represented in clinical trials, and I know that a focus in the UK and also in North America as well. And it is really important that patients have access to a clinical trial if they need it, and also that we understand how investigational products will work in people of different backgrounds. So for example, we know that probably, Nicole, your blood count assuming it’s a healthy, normal blood count may well be different from mine for background, racial genetic differences, so drug metabolism might be different, so this is really important, and we need to work hard as a community, the clinical community and the patient community to raise awareness and improve access for patients. 

Dr. Nicole Rochester: 

Well, as someone who does a lot of work in health equity, Dr. Harrison, I really appreciate you pointing that out. It’s certainly an issue here in the United States, as you mentioned, differential access to clinical trials, and we’ve learned that not only our patients, often not aware, but often the providers, at least here in the U.S., are not offering clinical trials as an option for patients from marginalized and minoritized communities. So I really appreciate you bringing that up. 

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

PEN Featured On Advarra’s In Conversations With Podcast

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Patient Empowerment Network (PEN) recently had the opportunity to participate in a podcast with its partner Advarra through their In Conversations With podcast. In this episode, Becoming Your Own Best Advocate Through Patient Empowerment, Advarra’s Chief Commercial Officer Robann Cunningham and PEN’s Director of Development Robin Barnes discuss how patients can become their own best advocate through resources like those provided by PEN. 

Advarra’s Mission

Advarra helps advance how clinical research is conducted: gathering life sciences companies, CROs, research sites, investigators, and academia together at the intersection of safety, technology, and collaboration. With its trusted review solutions, innovative technologies, and consultants and worldwide connections, Advarra provides solutions that help safeguard trial participants, empower clinical sites, ensure compliance, and optimize research performance. Advarra is working on clinical trials to help make them safer, smarter, and faster for all patients. You can learn more about them at advarra.com.

Breast Cancer Survivor’s Lessons About Patient Engagement

Robann Cunningham of Advarra has a personal connection to Patient Empowerment Network’s mission through to her own experience as a breast cancer survivor. After her diagnosis with triple-negative breast cancer with a BRCA mutation, Robann was scared but also felt fortunate to have knowledge of how to take control of her cancer journey as an engaged patient. She knew about the importance of exploring treatment options and multiple opinions to decide on the best path forward for her. Robann feels that one of her goals in her mission as a breast cancer survivor is to increase patient engagement in clinical trials, and the podcast with Robin is one way she has worked toward fulfilling her goal. 

Robann collected some key takeaways from her cancer journey including:

  • Finding the right path for you is key—and knowing how to find it is even more important.
  • Education and awareness are everything.
  • We can increase the number of success stories.

You can learn more about her breast cancer experience in her article “What Being a Breast Cancer Survivor Taught Me About Patient Engagement.”

Empowering Patients 

The Advarra In Conversations With podcast provides a rich conversation about patient empowerment. Robann shares some things about her cancer journey, while Robin shares about her experience as a care partner for her husband. Robann shared her views about empowerment, “The humbling experience that that was being in this industry, but I think what I really took away and what’s important here is that I would define empowerment as both awareness and advocacy and I think that if we can raise awareness, advocate, and then I would also say education is critical.”

Robin also shared PEN’s views, “Empowerment will mean something different to each and every one of us, but at the Patient Empowerment Network the core of what we believe empowerment means is having the knowledge and also the confidence to become a co-decision maker with your healthcare team, and what that often looks like is insisting on personalized treatment options it means asking questions, it means having the knowledge and education though resources…to be able to come with confidence to that conversation and make sure that what you are receiving is the right treatment for you…”

Clinical Trials Process

Clinical trials, of course, are discussed in the podcast. Robin shared, “Encouraging patients and care partners to not think of the clinical trial, as a last resort option if other treatments have failed but to consider it at the very first step of a diagnosis, and that, of course, ties into when appropriate biomarker testing and all of these wonderful tools that we  have today.”

Regarding clinical trial informed consent documents, Robann shared, “I recommend if anyone out there is considering getting involved is to really take your time through that process, make sure that you are afforded that opportunity to have a conversation with the investigator and staff you ultimately you need to have a level of confidence and a good relationship with your investigator and their team…” Patients must be given time to take the document home to review the terms and to discuss them with their care partner and family members to ensure the patient is comfortable with the proposed research. I know Robann also shared, “…there is a popular saying, which is ‘Nothing about me without me,’ and so much of what you’ve shared today, I think, really speaks to that.”

In the podcast, Robann and Robin also discuss timely topics including health literacy, health equity, actionable resources, community-based organizations, and goals for the future. PEN is excited to be partnering with Advarra to help advance patient empowerment and clinical trial efforts. We hope you can take some time to listen to the podcast or to read the podcast transcript – and to read Robann’s article about her breast cancer experience and what she learned about patient engagement. Stay tuned as we report more about our ongoing partnership efforts with Advarra in our dedicated efforts on the behalf of cancer patients and care partners.

Listen Now

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.

Are Mobile-Optimized Tools Making an Impact in Prostate Cancer?

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Are Mobile-Optimized Tools Making an Impact in Prostate Cancer? from Patient Empowerment Network on Vimeo.

Prostate cancer screening can now be accessed via some mobile methods. Dr. Heather Cheng from Seattle Cancer Care Alliance shares information about mobile-optimized tools and access – and how mobile access is working toward health equity.

See More from Prostate Cancer TelemEDucation

Related Programs:

Should Prostate Cancer Patients and Families Keep Using Telemedicine?

Should Prostate Cancer Patients and Families Keep Using Telemedicine?

 Understanding New Targeted Therapies for Prostate Cancer

Understanding New Targeted Therapies for Prostate Cancer

Can Prostate Cancer Patients Rely on Telemedicine Without Risk?

Transcript:

Sherea Cary:

Can you speak to any mobile-optimized tools making a difference in prostate cancer?

Dr. Heather Cheng:

So, I don’t know specifically about…well, I can speak about some efforts I know about, but I think the mobile options are really a great idea. And I think the way I would think about it is, there are maybe…and I know this is the case, for example, mammograms. But I know that there can be traveling clinics where they may offer, for example, the prostate-specific antigen blood tests, which can be used as a screening to determine if somebody might have prostate cancer, and that might be something that somebody otherwise is really busy and doesn’t necessarily have access to. Usually, it’s something that is done by the primary care provider but can be done through mobile access, and I think some of the procedures could be done like blood tests for prostate cancer, I think to get an actual diagnosis to really be confident that there is prostate cancer, not something that’s just causing the PSA, that blood test could be high. Sometimes people can have a high PSA without cancer, and so it’s important to actually get a biopsy to help be more confident and know for sure that there’s cancer. That’s usually done in a clinic, but the screening, meaning the sort of trying to figure out if somebody’s at higher risk or not can be done in a mobile van, and I think there are a number of many excellent programs around the country, not enough, probably, but whose mission it is to try to improve access to cancer screening.

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.”

Digital Advocacy and Health Equity for CLL Patients

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Telemedicine or telehealth – remote access to healthcare – has become widely used after the arrival of the coronavirus pandemic, especially by cancer patients. But the rise in telemedicine has also brought challenges to the vulnerable populations of Americans over age 65 and to low-income Americans who have struggles getting online. 

Among patients who are over age 65, only 55 percent to 60 percent of them have broadband access from home or own a smartphone. These patients also have challenges with completing information online, with only 60 percent who have the ability to send an email, to complete a form, and to locate a website. Among low-income patients, only 53 percent are digitally literate, and they also have lower rates of Internet use, broadband access, and smartphone ownership compared to other patient groups. 

Empowering Vulnerable Communities

As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) is working to foster change toward achieving equitable healthcare for all. In order to provide practical usage of telemedicine tools, PEN created the TelemEDucation Empowerment Resource Center for chronic lymphocytic leukemia (CLL) patients and their loved ones. Another resource, the digital sherpa™ program, helps cancer patients and their families become more tech-savvy by learning to use technology to their advantage during their cancer journey and beyond.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to CLL patients:

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits:

  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time so that you aren’t rushed when your appointment time arrives.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late.
  • Try your best to remain flexible and to be patient.
  • Try to write down your questions before your appointment to keep on track about things you want to learn during your visit.
  • Remain focused on the main purpose of your visit as much as possible. Polite small talk is fine but keep it to a minimum so that you can get the most out of your visit. 

CLL Patients Who Benefit the Most From Telemedicine

Not every CLL patient will be a good fit for telemedicine visit. Things to keep as top of mind for telemedicine visits:

  • CLL patients who are on active surveillance from their care providers are a natural fit for telemedicine. They can get periodic blood tests from a local laboratory, and the results can be sent electronically for their CLL specialist to evaluate.
  • Patients with high-risk genetic features or rapidly progressing CLL are not the ideal patient for care via telemedicine.

In the time of the coronavirus pandemic, remote monitoring has become part of standard healthcare terms. Some things for CLL patients to know:

  • Though it may be a new healthcare method for many patients, monitoring has actually been used for decades in the care of CLL patients and others with suppressed immune systems.
  • Remote monitoring is used to reduce the risk of infection to those with reduced immune system function, such as those with cancer and CLL.
  • Remote monitoring is a completely safe medical practice for CLL care when a patient’s blood work is monitored on a regular basis. Always ask your doctor if you’re unsure if you’re a candidate for remote monitoring or if you have questions about the frequency of your blood tests.

How Telemedicine Can Improve CLL Care

Now that even more CLL patients have become accustomed to using telemedicine care tools, CLL experts are looking to the future. Looking ahead:

  • Telemedicine can help CLL patients who live in very remote areas to gain access to clinical trials that weren’t accessible to them in the past.
  • CLL therapies will continue to improve for patients as a higher percentage of CLL patients participate in clinical trials.
  • The improvements in remote monitoring will bring more tools for CLL patients to do routine things like sending their heart rate and other things to their care provider in real time. 

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools are gaining both in usage and numbers, CLL patients can feel hopeful about improved care and treatment toward the future. As a step in that direction, take advantage of the resources below and continue to visit the TelemEDucation Empowerment Resource Center for informative content about CLL and telemedicine.

Resources for Telemedicine and CLL

Dr. John Pagel’s Top Tips for Preparing for Your CLL Telemedicine Visit

Telemedicine Challenges and Opportunities for CLL Patients

Will Telemedicine Mitigate Financial Toxicity for CLL Patients?

What Subset of CLL Patients Should Utilize Telemedicine?

Will Telemedicine Be Part of Routine Management for CLL?

How Will Telemedicine Impact Time-Limited Therapy in CLL?

What CLL Population Will Benefit Most From Telemedicine?

Remote Monitoring

TelemEDicine ToolBox Visit Checklist

TelemEDicine ToolBox Glossary

 

Will Telemedicine Give More CLL Patients Access to Clinical Trials?

Will Telemedicine Activate More Remote Monitoring for CLL?

Will Telemedicine Improve My Quality of Life with CLL?

Will Telemedicine Be a Long-Term Survivorship Tool for CLL Patients?

What CLL Symptoms Can Be Monitored via Telemedicine?

Is Remote Monitoring for CLL Patients on CAR T Therapy the Future?

digital sherpa™ program