PEN Featured On Advarra’s In Conversations With Podcast

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

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.

Introduction to Patient Empowerment Network

“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 underrepresented people impacted by cancer.

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.

We are:

  • 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 —

Three Myths Busted About Non-Small Cell Lung Cancer

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.

Expert Advice for Navigating Non-Small Cell Lung Cancer Care and Treatment Resource Guide

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7 Things People with Cancer Need to Know About Infection

Everyone living with cancer understands the dangers of their disease. But did you know that infections cause, or are involved in, about 60% of all deaths for cancer patients? This is because many cancers, and many cancer therapies, can weaken your immune system. As you enter each phase of treatment, your doctors will prepare you for what to expect, but here are 7 things every patient with cancer — and those around them — need to know about infections. 

1. Know if you’re at risk, and when.

 Almost 20 million people are diagnosed with cancer each year, and nearly all cancer patients are likely to be immunocompromised at some point (or points) of their disease course. Hematologic cancers like leukemia, lymphoma, or multiple myeloma can weaken the immune system themselves, and certain solid cancers are related to diseases that weaken the immune system, like AIDS.

But even if your disease doesn’t impact your immune system, the treatment might. Most patients undergo treatments with chemotherapies, which attack the fast-dividing cells of the cancer, but also bone marrow that manufactures immune cells. Similarly, common treatments for blood cancers involve destroying and replacing bone marrow to reboot the immune system. Your doctor will inform you if you enter a treatment phase that requires extra caution and vigilance.
 

2. Understand the dangers of infections for the immunocompromised.

Patients with cancer may have unique challenges from infections that people with fully functioning immune systems may not. The most obvious issue is your body can’t mount its usual defense, leaving you unable to fight off what would be otherwise routine illnesses. Also, you are susceptible to certain types of pathogens, like certain fungal infections and hospital-acquired infections, that a healthy immune system would block early.

Importantly, your body’s common tools against infection — fever, inflammation, increases in certain easily-detected immune cells — are often the telltale signs of an infection. If they don’t occur normally, it’s easier to miss red flags of early disease, when treatment is often easier.

3. Protect yourself to avoid infection.

The best defense against infection is to not get one. Living through the pandemic has likely made you familiar with some common tools and strategies to minimize exposure to infectious diseases: wear the right mask, wash your hands frequently, and avoid contact with sick people and crowds. Vaccines can be important armor against infections, especially if you are not yet immunocompromised — but may become so later in treatment. (Your doctor can guide you on which vaccines to update.)

If you are already immunocompromised, it’s important for those around you with healthy immune systems to get vaccinated. They become your first line of defense.

If your white blood cell counts are low, you are considered neutropenic. Neutropenic patients should avoid hiking, where you risk exposure to molds growing in natural environment that might be dangerous. Similarly, avoid construction sites, which tend to aerosolize dirt — increasing the spread of dangerous pathogens.

4. Know the signs of infection.

Sometimes getting sick may be unavoidable. Infections may present differently in immunocompromised patients, depending on the type of infection, immune status, and how far a disease has progressed. But there are signs to watch for: 

Fever.

This is the number one red flag, though it can be hard to interpret. When patients with low white blood cell counts have a fever it’s called febrile neutropenia. Because of the danger in developing a blood infection that escalates to life-threatening sepsis, patients will often be placed on broad-spectrum antibiotics immediately when presenting with a fever, though more accurate treatment. Fever, however, can also be a sign of cancer progression. 

Respiratory symptoms.

Things like shortness of breath or difficulty breathing can be signs of lung infection and pneumonia. 

Acute pain.

As with many symptoms, pain in the chest or abdomen are not necessarily signs of infection, but need to be investigated in immunocompromised patients 

Weight loss.

Weight loss is associated with serious infections like tuberculosis, which may be slow to show symptoms in patients with compromised immune systems. 

Fatigue.

Another symptom that can have many causes.

5. Have a plan.

Don’t let the signs of infection catch you off-guard. The point at which you’ll be most at risk of infection is often predictable — for example, when white blood cell counts have dropped just after chemotherapy. This can help you prepare and stay vigilant.

Typically, doctors will advise blood cancer patients with signs of infection not to go to an emergency room — mixing with a general population of acutely ill patients could expose you to other dangerous pathogens. 

But that doesn’t mean to ignore symptoms or avoid care — if you wait until you experience drops in blood pressure or spiking fever, the outcomes could be worse. Instead, many oncologists recommend you call your cancer clinic, where your potential infection can be addressed by your doctors in a controlled setting. It’s understandable that patients will not want to be admitted too early, but early treatment tends to give better results. Make a plan with your specialists before you wind up in harm’s way. Speak with your family members so they know how to help you if you are in need. And know where you need to go.
 

6. Stay safe in the hospital.

The most common infections for immunocompromised patients are from opportunistic pathogens. This can include hospital-acquired infections, which is why most specialists will help you try to avoid the hospital if possible.

But sometimes it’s unavoidable. In these cases, you will most likely be transferred in from your cancer center or — after a phone call to your specialist — directly from home, avoiding the ER. Often, this means you will be in a dedicated cancer ward, intensive care, or otherwise segregated from people with normal immune systems. In any event, health care providers will be wearing masks and other protective gear to prevent exposing you to new pathogens. Hospitals also have additional safety protection like HEPA air filters and rigorous protocols to prevent contamination.
 

7. Be ready for the fight.

Clinicians will often use empiric antimicrobial therapy for cancer patients showing signs of infection. Under this approach, doctors begin the process of testing for the specific pathogen, but simultaneously start the patient on a broad-spectrum antimicrobial therapy while waiting for the results of testing. If testing can identify a specific cause, the doctors can switch to a more directed therapy that is appropriate for the specific illness.

If they can’t, there is still a chance the signs of infection will resolve, sometimes without ever finding a specific diagnosis. Those patients may have endured additional suffering, remained at elevated risk for new infections in a hospital setting, or encouraged antimicrobial resistance by treating a pathogen with an inappropriate treatment course. In the worst-case scenario, failure to identify the right pathogen may lead to worse outcomes for the patients.

The good news is that diagnostic testing is improving, and there are novel, highly accurate tools to help doctors get their patients on the most appropriate therapeutic course faster. This means directed treatment for more patients, earlier in the course of disease, for better outcomes with less antimicrobial resistance. 

About Patient Empowerment Network (PEN)

Founded in 2009, Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization working on behalf of cancer patients and care partners. For more than a decade, we’ve been improving treatment outcomes and health equity for cancer patients and care partners at every step of their journey. PEN was founded by a chronic lymphocytic leukemia (CLL) patient, and over time we’ve dramatically expanded the cancer types for which we provide resources and support. Here’s a closer look at our origins, mission, programs, and goals for the future.

Origins and Vision of PEN

Unfortunately, a cancer diagnosis can overwhelm both patients and their loved ones. The need to take control after cancer diagnosis provided the seed, and the idea for PEN was born. With patients and their families in mind, we embarked on a path toward empowering them to ask the right questions at the right time for improved care. With this empowerment, patients and care partners built their health literacy to make informed choices in shared decision-making along with their care team.

PEN Mission

With that vision in mind, we penned the mission statement to guide the work ahead. Our mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcome.

How PEN Is Different

So how does PEN differ from other cancer advocacy organizations? At PEN, we take patient education a step further; we educate, then ACTIVATE cancer patients and their care partners to become shared-decision makers with their healthcare teams. By insisting on the most current and personalized care available, empowered patients achieve better treatment and health outcomes.

PEN Programs

With a wide array of content, our programs enhance patient health literacy to enable shared decision-making and to provide informational and educational resources to empower patients and care partners at every step of their cancer journey.

In 2020, we adopted the Path to Empowerment Framework to guide us in empowering patients and care partners along this journey. We know not everyone’s experience with cancer is the same, there are commonalities. Based on the National Cancer Institute’s Cancer Experience Map, we have outline six commonalities. Within the framework’s six categories, you’ll find easy-to-understand and reliable information.

Path to Empowerment Framework

The Future of PEN

We are on track to serve over 200,000 patients and care partners in 2021. And in the future ahead, we aim to continue empowering patients and their families with knowledge to improve their treatment and health outcomes; build key strategic partnerships to expand into additional disease areas, expand the reach and visibility of PEN content; and locate and build additional funding resources. With these goals in mind, PEN can continue fortifying a sustainable future of serving and empowering patients and care partners toward optimal care and health outcomes for all.

5K Path to Empowerment Race Bib

Which Lung Cancer Treatment Is Right for You? What You Need to Know Guide

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