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 underserved 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 underserved 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 underserved 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 underserved cancer patients and for those who work to support these patients.
This month innovative technology and research has enabled doctors and scientists to look at reasons for increasing numbers of cancer cases, leading to preventative measures. United States Veterans are at a higher risk for getting a deadly skin cancer, melanoma. Research shows that the causes of liver cancer are changing, it is the third deadliest cancer. And finally, a team of scientists using a new genomic technique have found some causes of upper gastrointestinal cancers.
U.S. Veterans at Higher Risk for Deadly Skin Cancer Melanoma
U.S. veterans are at higher risk for melanoma, the deadliest form of skin cancer, than most Americans, and new research finds they are also more likely to have advanced-stage disease when it is detected reports UPINews.com . When the cancer is found, it has typically spread to the lymph nodes or other areas of the body through the bloodstream. Of all the skin cancers, melanoma has the highest mortality rate. Older white males are at higher risk for developing skin cancer, which are a higher percentage of veterans. Many veterans service took place outside in high UV environments, and it is less likely that sunscreen was worn. Melanoma is now preventable by wearing protective clothing and using 30 SPF or higher sunscreen. Early screening and diagnosis increase the chances of survival. Find more information here.
Causes of Liver Cancer are Changing, Study Finds
The primary causes of liver cancer are well known, viral (hepatitis B and C), alcohol and non-alcoholic steatohepatitis (NASH), a condition in which fat builds up in the liver, resulting in chronic inflammation and damage reports Knowridge.com . The hepatitis B vaccine and use of antiviral medications have caused a decrease in Hepatitis B liver cancer. Liver cancer is the third leading cause of all cancer deaths. The causes of the rise in liver cancer are now shifting with an increase in alcohol consumption and an increase in obesity. Simple lifestyle changes can lower the risk of getting liver cancer, such as decreasing alcohol intake and making dietary changes to help prevent getting a fatty liver. Find more information here.
New Genomic Technique Identifies Roots of Upper GI Cancers
A team of scientists at Van Andel Institute findings reveal that, in upper GI cancers, the oxidative stress caused by inflammation damages specific parts of the DNA, causing guanine to be replaced with oxidized guanine. These errors prevent DNA from being copied accurately- a key hallmark of cancer reports Technologynetworks.com . Upper GI cancers are preceded by inflammatory conditions such as H. pylori bacteria, this bacterium causes stomach ulcers. Another inflammatory condition is Barrett’s esophagus, this is caused from acid reflux. This team uses circle damage sequencing to determine where mutations occur in DNA sequencing. Circle damage sequencing has also been used to study the mutations that cause melanoma. Find more information here.
Dana Kaiser is a professional writer and a strong patient advocate, learning from experience during her 22-year career as a nurse.
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 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.”
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.
The Patient Empowerment Network digital sherpa™ program empowers mostly older cancer patients to improve treatment outcomes through digital technology. Program participants learn skills including identifying credible online resources, using telemedicine and their patient portals, and how to use mobile devices to improve health.
Benefits program participants have learned include how to:
1. Use Patient Portals
Using patient portals can be helpful to save time for common tasks. Participants learn about booking health provider appointments, requesting prescription refills, and getting lab test results.
2. Perform Google Searches
Doing Google searches can be helpful when carried out with a watchful eye. Participants learn about performing Google searches, finding reliable sources, adding bookmarks for favorite websites, and copying and sharing links with others.
3. Utilize Social Media
Twitter and Facebook social media tools can be useful for those seeking more information and support. Participants learn the nuts and bolts of both tools including how to set up an account, checking and maintaining privacy settings, how to post or tweet, finding experts, connecting to online support communities, using hashtags and tweetchats, and posting photos.
4. Benefit From Telemedicine
Learning about telemedicine and best practices can be helpful for optimal visits. Program participants learn how to install video conferencing tools, how to be prepared for a telehealth visit, and who to contact if they run into issues.
5. Improve Health Travel
Using mobile apps can assist patients and care partners in health-related travel. Participants learn about the apps Uber and Lyft and are shown how to set up accounts.
6. Engage With Patient Communities
Engaging with patient communities can be reassuring for patients and care partners alike. Program participants learn about patient communities such as Inspire, PatientsLikeMe, MyLifeline, StupidCancer, HealthUnlocked, Cancer Support Community and how to join support groups in them.
By taking part in the digital sherpa™ train-the-trainer program, participants can learn valuable skills to gain confidence and to improve treatment outcomes through digital technology.
“Educating yourself can change your prognosis, outlook, and outcome. It changed mine. Patient Empowerment Network’s resources provide empowerment and boost hope.” – Lisa Hatfield, Multiple Myeloma survivor
The best cancer care happens when you’re empowered to ask the right questions, at the right time. Yet a diagnosis can make patients and their families feel out of control. Patient Empowerment Network (PEN) is where to go for help.
Patient Empowerment Network is a virtually-based non-profit organization trusted by millions of cancer patients and care partners to achieve improved health literacy, equity, and treatment outcomes at every step of their journey.
Our programs include free webinars with leading medical experts, digital literacy skills training workshops, downloadable doctor’s visit check-lists, online courses which teach skills including how to use telemedicine, animated explainer videos, patient story vignettes, a blog, activity guides, and more. You can find an overview of our 2023 programs, here.
All of PEN’s programs are built on our Path to Empowerment framework to provide for every step of a cancer journey: From Newly Diagnosed, Testing, Treatment & Clinical Trials, Access & Affordability, Whole Patient Support, to What’s Next.
Many of our programs are specifically designed to improve health equity for BIPOC, elderly, and other underserved cancer patients and care partners.
What differentiates Patient Empowerment Network from other cancer advocacy groups is that we take patient education a step further; we educate, then ACTIVATE patients and their care partners to become co-decision makers with their healthcare teams. By insisting on the most current and personalized care available, empowered patients achieve better treatment outcomes.
Our website annually receives nearly a half-million unique website visitors, and in 2022 our programs served more than 362,500 patients and care partners. With your support, we can help even more to achieve improved cancer treatment outcomes.
PEN operates with a $1.85M annual budget obtained primarily through corporate grants and charitable donations which allows us to offer free access to our programs which feature leading experts and doctors with specialized knowledge and give patients the opportunity to receive answers to their questions, often in real time.
- a 501(c)(3) public charity founded in 2009 (Tax ID 27-1295230);
- a virtual organization operating in the U.S., led and advised by high-profile patient-leaders
- efficient in the delivery of our mission: >85% of our income is invested into programs;
- creators of programs that address unmet cancer patient and care partner needs via a Path to Empowerment Framework; all programs include a measured and reported Call to Action
- previous grant/sponsorship recipients from AbbVie, Astellas, BMS/Celgene, Blueprint Medicines, Daiichi Sankyo, Eisai, Exact Sciences, Exelixis, Genentech, Incyte, Jazz, Karyopharm Therapeutics, Merck, MorphoSys, Myovant Sciences, Novartis, Novocure, Pfizer, Pharmacyclics, Sanofi, SeaGen, and Takeda.
—Visit us at www.powerfulpatients.org to learn more —
What’s the truth about non-small lung cancer myths? In the “Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer” program, expert Dr. David Carbone from The Ohio State University Comprehensive Cancer Center (OSUCCC) explains accurate information about three non-small lung cancer myths.
1. Lung cancer is a disease of the older population.
Unfortunately, anyone of any age can develop lung cancer. A minimum age of 50 or older is required for some lung cancer CT screening programs, but many patients in their 30s or 40 or even younger have developed lung cancer. Lung cancer treatments have advanced in recent years, and research funding is important to continue developing new effective treatments.
2. Quality of life is greatly diminished after undergoing treatment for lung cancer.
Contrary to what many people may think, quality of life usually improves after starting lung cancer treatment. Lung cancer specialists want their patients to feel better, and improving their quality of life is the primary concern for them.
3. There are no effective treatments for advanced lung cancer.
Advanced lung cancer treatments have increased and improved as more research has been carried out. Time of survival was formerly measured in the number of months. But as better treatments have been approved for use, time of survival has been measured in the number of years instead. Treatment options can vary by the situation of each patient, but treatments for advanced lung cancer have in general become more effective.
By understanding more about non-small cell lung cancer, detection efforts can be increased to improve health outcomes for patients of all ages, health situations, and lung cancer stages. If you want to increase funding for lung cancer research, take action to join lung cancer fundraising activities. In addition, the Lung Cancer Research Foundation is one credible resource for finding lung cancer information.
To download the guide, please click:Colon Cancer Download