Battling Small Cell Lung Cancer | One Man’s Journey

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Battling Small Cell Lung Cancer | One Man’s Journey from Patient Empowerment Network on Vimeo.

Terrence’s diagnosis with extensive stage small cell lung cancer (SCLC) came as a shock. He learned the value of a positive attitude and how “just as in battle, I understood early on that a solid partnership with my healthcare team would be crucial to my outcome.” He shares his perspective, lessons learned, and how to stay [ACT]IVATED in your care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Lessons From a Small Cell Lung Cancer Care Partner

Lessons From a Small Cell Lung Cancer Care Partner

 Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains
 Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key

Transcript:

My name is Terrence, and I’m living with extensive-stage small cell lung cancer (SCLC). This diagnosis came as a shock, but I decided to persevere and fight. Cancer care can feel like a marathon, and certainly not a sprint – particularly for patients like me. As a small cell lung cancer survivor, I want to share my perspective and lessons learned from my cancer journey about staying ACTIVATED in your care.

My symptoms started with a cough that wouldn’t go away. As a military veteran, I assumed the cough was something I picked up years earlier. And even though I had been a smoker, my doctor didn’t order any scans as a pre-emptive screening measure, nor did I know what questions to ask. It wasn’t until I found a lump under my arm that further testing was done. It was at that time that I also put the other pieces of the puzzle together, which included symptoms of higher than normal blood pressure and knee pain.

I received chemotherapy and radiation, and also quickly learned that despite the challenges of treating my cancer, maintaining a positive attitude was the most critical part of my regimen. I was fortunate to have a medical team that listened to me and didn’t dismiss my concerns. Just as in battle, I understood early on that a solid partnership with my healthcare team would be crucial to my outcome.

Under the care of my healthcare team, I continue to receive scans of my lungs and brain every three months and feel grateful to be doing well. My care team and I also actively look for clinical trials that may be right for me. I urge other small cell lung cancer patients to ask your care team questions to learn about treatment options and what to expect during and after treatment – you matter. 

For the past decade, there have been a lot of research advancements about non-small lung cancer (NSCLC) treatment, but our small cell lung community is feeling left out of conversations about investments to improve lung cancer diagnosis and treatment. The SCLC patient community also deserves improvements in care and treatment. Fortunately, things are changing. Progress in personalized medicine has allowed scientists to develop targeted therapies tailored to a patient’s body using their genes to prevent, diagnose, or treat an underlying disease. Clinical trials are one opportunity to be on the ground floor of these developments where you may be able to get tomorrow’s medicine today. I hope sharing my perspective will make a difference for others. 

While the battle ahead has uncertainties, stay [ACT]IVATED with these tips:

  • Don’t allow stigmas to keep you from getting the best care, now is the time to get the right care no matter how you got the cancer.
  • Ask your care team questions to learn about small cell lung cancer treatment options and what to expect during and after treatment.
  • Ask if a clinical trial may be a potential treatment option for you.
  • Stay abreast of small cell lung cancer treatment options and research advancements.

Whether it’s combat in war or fighting cancer, no matter who you are, take it from me, attitude is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in your small cell lung cancer care.

Lessons From a Small Cell Lung Cancer Care Partner

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Lessons From a Small Cell Lung Cancer Care Partner from Patient Empowerment Network on Vimeo.

As a small cell lung cancer (SCLC) care partner, Anita learned things during her husband Terrence’s cancer journey that she’d like to share to help others. “Communication with the healthcare team and learning about your loved one’s cancer are key to supporting their cancer journey.” She shares lessons learned and specific advice for how to support your loved one in their cancer care.

Disclaimer: Thank you to small cell lung cancer expert Dr. Rafael Santana-Davila, PEN’s Empowerment Leads, patients, and care partners for reviewing and collaborating on this video. This video has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

Related Resources:

Battling Small Cell Lung Cancer | One Man’s Journey

Battling Small Cell Lung Cancer | One Man’s Journey

 Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains

Moving Past Small Cell Lung Cancer Stigma | A Patient Navigator Explains
 Small Cell Lung Cancer Care | Communication As a Key

Small Cell Lung Cancer Care | Communication As a Key

Transcript:

Staying ACTIVATED in your loved one’s cancer care is essential to becoming informed, empowered, and engaged in their care, take it from me. My name is Anita. As a care partner to my husband Terrence who has extensive-stage small cell lung cancer (SCLC), I want to share my perspective and lessons learned from his cancer journey. 

It was difficult seeing my husband Terrence struggle with a cough that wouldn’t go away. We also now know that he should have received lung cancer screening due to his past history of smoking. As a care partner, I blamed myself for not speaking up at his earlier appointments. How could I have advocated differently?

Though it was challenging learning that the extent of his cancer may have been prevented with recommended screening, I want to share my lessons learned to help other patients and care partners who may be struggling with the impacts of cancer.

Ongoing communication with the healthcare team and learning about your loved one’s cancer are key to supporting their cancer journey. To help your loved one, you can join them at their doctors’ appointments to serve as a second set of ears, to take notes, to ask questions, and to assist in the shared decision-making process. Staying [ACT]IVATED as a care partner continues to be key in helping Terrence connect to the right care at the right time.

My [ACT]IVATION tips for other care partners are to:

  •   Ask the stage of the cancer and what the lab test results mean.
  •   Inquire about treatment options and what the doctor recommends for treatment.
  •   Find out if there’s a clinical trial that is a treatment option.
  •   Pose questions about the goal or goals of treatment.
  •   Learn what to expect from treatment impact on daily life and ask about support services.
  •   Inquire about who you can contact about side effects or other issues.
  •   Avoid care partner burnout, ask someone for help to ensure you get some self-care and time to recharge.

If you’re a care partner helping a loved one in the fight against small cell lung cancer, knowledge is everything. Stay [ACT]IVATED by being informed, empowered, and engaged in their care.

September 2023 Digital Health Roundup

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Technology is helping doctors save cancer patients during treatment and with brand new treatments. Remote patient monitoring is detecting neutropenic fevers early in patients undergoing cancer treatments. Scientists have developed a micro device to implant inside tumors to help treat brain gliomas. With the use of CRISPR, researchers have developed a way to reprogram cancer cells into healthy muscle cells.

How Remote Patient Monitoring Can Save Cancer Patients’ Lives

Neutropenic fever is a common complication for cancer patients undergoing chemotherapy. In fact, one out of every 29 chemotherapy-treated patients is hospitalized, with a startling mortality rate of 7 to 9.5% reports Healthcare IT News. Remote patient monitoring devices include wearable temperature sensors, heartrate monitors, and respiratory rate monitors. Neutropenic fever is a common side effect of chemotherapy, but it can be serious or even fatal. This remote patient monitoring can detect fevers without symptoms or that occur during sleep. It is a simple patch that is Bluetooth enabled and transmits the data constantly. The neutropenic event caught early enough can prevent a hospital admission. Early detection of neutropenic events will improve patient outcomes and decrease the cost of admission by prevention. This success of the remote patient monitoring depends on the training of the monitoring staff. The staff must be able to recognize early warning signs of neutropenic events and respond quickly. Click here for the full story.

Microdevices Implanted into Tumors Offer New Way to Treat Brain Cancer

The shape and size of a grain of rice, the new device can conduct dozens of experiments at once to study the effects of new treatments on some of the hardest-to-treat brain cancers reports Medical Design & Development. Researchers from Brigham and Women’s Hospital designed this micro device to treat gliomas which are brain and spinal cord tumors. It monitors the effects of drugs on the tumors while surgically implanted during the treatment and it is removed before the surgery is over. This device helps to monitor the use of combination therapies and its effects on the tumor. It is implanted for two to three hours while tiny doses of drugs are given, up to 20 different drugs. The data and surrounding tissue are analyzed to learn if the drugs are effective on the tumor’s microenvironment. During the studies, there have been no adverse effects on the patient from the device. Click here for the full story.

CRISPR Used to ‘Reprogram’ Cancer Cells into Healthy Muscle in the Lab

The study published August 28 in the journal PNAS, Researchers found that disabling a particular protein complex in cells of rhabdomyosarcoma (RMS)- a rare cancer in skeletal muscle tissue that mainly effects children under age 10- in the laboratory causes the tumor cells to turn into healthy muscle reports Live Science. Differentiation therapy is the act of changing cancer cells into healthy cells and has been used for blood and bone cancers. This therapy uses CRISPR technology to alter proteins to stop cancer multiplication and can eventually be used as a treatment option. In RMS, a genetic mutation makes a protein that causes the skeletal muscles to turn into cancerous tissue. CRISPR was used to disable certain genes to stop this mutation process, and then turned the cancerous cells into healthy cells. Click here for the full story.

Why Test Results Matter | Accessing Personalized Non-Small Cell Lung Cancer Treatment Resource Guide

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[ACT]IVATED NSCLC Patient and Care Partner Stories

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From a Swallow Test to an NSCLC Diagnosis: Heather’s Story

From a Swallow Test to an NSCLC Diagnosis Heather’s Story from Patient Empowerment Network on Vimeo.

Transcript:

My name is Heather, and I was diagnosed with stage IV non-small cell lung cancer (NSCLC). My diagnosis came as a shock after going to my doctor due to a sensation of food getting stuck in my throat. It wasn’t the first time that I felt this in my throat, so my primary care physician sent me for a swallow study to further investigate. They also took a biopsy of a stomach polyp at this time, which turned out to be cancerous. 

I was surprised to learn I had cancer but was even more shocked after scans revealed that I had metastatic lung cancer. Of course, I know now that nonsmokers can get lung cancer too. With being a wife and mother, I wanted to get back to my life with my husband and three children. 

Further testing revealed that I had EGFR exon 19 mutation, which causes cancer cells to grow out of control. I was placed on the standard of care treatment of osimertinib (Tagrisso) that I received in three-month increments. Though I experience some treatment side effects, I continue taking the medication as prescribed to continue life with my family. I want to see my children grow up, and I’ll continue with osimertinib as long as possible. I also feel hopeful that clinical trial participation will continue to bring new effective NSCLC treatments to patients who eventually need additional treatment options.

Some things that I’ve learned on my lung cancer journey include:

  • If you feel that something is not right with your health, go see your doctor as soon as possible.
  • If you’re unsure about anything with your diagnosis, ask questions to ensure you’re getting all the testing that you need for optimal care.
  • Get a second opinion and don’t rush to initial treatment, as it may disqualify you from a clinical trial.
  • Clinical trials play a vital role in prolonging life and giving hope to further the number of FDA-approved drugs.

For me, these actions are key for staying on the path to empowerment.

My Dad’s Lung Cancer Diagnosis Shridhar’s Care Partner Story

My Dad’s Lung Cancer Diagnosis Shridhar’s Care Partner Story from Patient Empowerment Network on Vimeo.

Transcript:

My dad Kisan was diagnosed with stage IV non-small cell lung cancer in September 2021. I’m his son Shridhar, and we live in Mumbai, India. My dad was diagnosed in his late 50s, and his symptoms began with severe headaches that were misdiagnosed by the general physician as symptoms of COVID-19. 

When he went to another doctor about the headaches, his symptoms worsened to the point that he couldn’t even walk. He then received an MRI the next day, and we were shocked to learn that the MRI showed he had 12 to 15 brain tumors, which suggested malignancy.

My dad was then sent to a neurosurgeon who suggested brain surgery for him followed by a PET CT scan to rule out malignancy. We then sought a second opinion from a medical oncologist, and he advised against having the surgery. However, he did recommend getting a PET CT scan done right away. After my dad received the PET CT scan, he received his cancer diagnosis and was referred to a radiation oncologist for SBRT for the brain tumors.

My dad also has an EGFR mutation, and lung cancer has progressed three times, but he’s been able to switch treatments each time and is doing well. His treatments have included radiation, followed by oral targeted therapy of afatinib, followed by chemotherapy and osimertinib, followed by radiation again and then chemotherapy. He then had a biopsy that found he had a MET mutation and is currently on targeted therapy and is doing well.

Even though he was given a prognosis of 6 months left to live by the radiation oncologist, he chose not to believe that and is living a normal life over a year-and-a-half later. I think it’s also important to note that my dad didn’t research on the Internet after he was diagnosed with NSCLC.

Our whole family has learned a lot on his cancer journey. Some of the things we’ve learned on his lung cancer journey include:

Educate yourself and ask your doctors questions. Learn about the available treatment options and discuss each one with your doctor. There’s nothing wrong with asking questions, and doctors expect patients and loved ones to have questions.

It’s always a good idea to seek a second opinion; especially in the cases of risky procedures like brain surgery. Seeking a second opinion is nothing to feel guilty about, and you or your loved one’s life depends on an accurate diagnosis.

Avoid negative doctors and don’t believe a death sentence in a cancer diagnosis. Just because a member of your care team says you don’t have long to live doesn’t mean it’s written in stone. My dad has defied the 6-month prognosis given by his radiation oncologist.

Ignorance can sometimes be bliss. Learning too much about your cancer may lead to a lot of worry, anxiety, and stress. Could it serve your health better for a care partner or family members to learn more about your cancer to ease some of your stress level?

Become comfortable with the idea of death no matter what age you are. Death is a natural part of life. Everyone dies sooner or later. Nobody is immortal. Worrying about death too much causes undue stress, and stress isn’t good for anyone.

As a care partner, these actions were key for staying on the path to empowerment. 

Three Factors That Determine Myeloma Treatment Decisions

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What are the key factors under consideration to determine a multiple myeloma treatment approach? In “Key Factors That Guide Myeloma Treatment Decisions” program, expert Dr. Joshua Richter from Multiple Myeloma at the Blavatnik Family – Chelsea Medical Center at Mount Sinai explains how to determine optimal approaches.

 1. Disease-Related Factors

The growth rate of myeloma – whether fast-growing or slow-growing – is a key factor in treatment decisions. Treatment in pill form may be an option for slow-growing myeloma, while intravenous or other treatment methods may be necessary to treat fast-growing myeloma. 

2. Treatment-Related Factors

A myeloma specialist will also take treatment-related factors into account. Some of these considerations will include issues like whether a patient stopped responding – or was refractory – to another treatment. Or if a patient experienced treatment side effects that couldn’t be lessened enough through adjusting dosage or by other means, that should be considered as well.

3. Patient-Related Factors

Myeloma treatment options must also take other patient health concerns into account. Considerations like physical fitness, kidney health, heart health, and medical problems like high blood pressure and diabetes must be considered. In addition, the patient’s myeloma symptoms must be weighed in the analysis for treatment decisions.

Myeloma specialists have some key factors to consider in narrowing down an optimal treatment approach. If you’d like to learn more about multiple myeloma, check out our multiple myeloma information.

INSIST! on Better Lung Cancer Care Resource Guide

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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

June 2022 Notable News

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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.

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.

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Six Ways the digital sherpa™ Train-the-Trainer Program Can Empower Your Members

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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.