Tag Archive for: digital sherpa

Equity through Empowerment

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

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

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

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

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

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

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

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

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

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

Internet Access, Digital Literacy, and Bridging the Digital Divide

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.


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

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.

Transportation Solutions for People With Cancer Who Can’t Drive

For people with cancer, transportation can be a major issue. While everyday trips like going to the store or running errands can be difficult enough, transportation becomes a bigger issue when you have to get to your medical appointments and treatment solutions.

Not having access to adequate transportation can hinder your recovery and add stress, making it even more difficult to stay strong and maintain a positive attitude throughout treatment.

Thankfully, even if you don’t have a vehicle or aren’t able to drive yourself, there are resources you can reach out to and options to consider when you need transportation. Your quality of care shouldn’t depend on whether you can drive. Let’s cover a few of those solutions, so you’ll never have to miss an important appointment or experience a lesser quality of life.

Why You Shouldn’t Drive

As many as 30% of people with cancer skip their appointments regularly. One of the biggest reasons why is a lack of transportation. That doesn’t necessarily mean you don’t have access to a vehicle or don’t know how to drive. But, your diagnosis and/or treatment could make it difficult or dangerous to get behind the wheel on your own, and you may be hesitant to ask someone else for help. If you’re going through radiotherapy or chemotherapy, it’s not uncommon to experience symptoms like

  • Fatigue
  • Nausea
  • Vomiting
  • Impaired motor skills
  • Difficulty concentrating

Obviously, it’s not a good idea to get behind the wheel if you’re struggling with any of those problems. Treatment impacts everyone differently, so until you know which side effects impact you the most, it’s a good rule of thumb to have someone else drive you to and from your appointments.

Even certain medications can impair your driving ability, so you might need to rely on someone to help you with everyday errands, too. If you’ve had “near misses”, multiple accidents, or multiple traffic warnings or citations, it’s a good indicator that it’s time to stop driving yourself until you’re off certain medications or until you’re able to build your physical and mental strength.

Reach Out to Resources

One of the best ways to find transportation to your appointments is by utilizing resources specifically designed for people with cancer. The American Cancer Society’s Road to Recovery program is one of the most popular transportation solutions. It offers free transportation to and from appointments, and all you need to do is visit their website and provide information about your location and schedule.

If you’re not able to find a Road to Recovery driver near you, consider reaching out to local church groups or the hospital you use for your treatment. Often, they will have volunteers or special services designed to provide transportation for those in need. While they might not be limited to people with cancer, as long as they are a trusted organization and are willing to work with your schedule, these are great resources to keep in mind.

Finally, reach out to your insurance company. Some companies reimburse people in need for any fares they might have to pay on public transportation, while others have programs that provide rides to their clients if there are no other options.

Utilize Technology

We haven’t officially perfected self-driving vehicles yet, but it’s coming! Learning more about the technological advancements in the auto industry can help you look for better safety features in your next vehicle, including things like

  • Lane assist
  • Blind spot detection
  • Parking assist

Some vehicles will even brake automatically if they sense a potential collision, which can be a huge help if you’re having trouble focusing or you’re tired after a treatment. Using technology to make driving safer and easier for you can build your confidence if you have no other choice but to transport yourself. However, technology isn’t perfect and there are still risks involved. If possible, it’s still safer to have someone else transport you while you’re undergoing treatment.

To that end, you can use ridesharing apps to help you get to your appointments. Uber created a dashboard specific to healthcare organizations that allows them to schedule car rides for patients. UberHealth gives providers the opportunity to coordinate rides for patients who might otherwise not have access to transportation. The Patient Empowerment Network’s digital sherpa™ program teaches cancer patients tech skills, including how to use ridesharing apps like Uber and Lyft. Thus, patients using the program always have access to transportation.

If you truly have no other transportation options, you can use technology to your advantage by utilizing telehealth. While some appointments will always need to be in person, including radiotherapy or chemotherapy treatments, you can practice better self-management and improve remote monitoring by connecting with your doctor online. Many physicians have their own digital portals, but even a video call can ensure you and your medical team are on the same page when it comes to your treatment.

Transportation difficulties should never keep you from getting the treatment you need. Keep these solutions in mind to keep yourself safe as you drive to and from appointments, and consider reaching out to family members or friends who might be able to help, too. You’re never going to burden someone with your request, and a lack of transportation shouldn’t be a reason to skip out on the treatments you need to beat the disease.

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

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.”

Meet a Recent Graduate of Our New Course, Digitally Empowered™

We’d like for you to meet Andrea Caldwell, a recent graduate of our Digitally Empowered™ course and digital sherpa™ program, conducted in partnership with the Cancer Support Community.

Andrea is already using her newly-gained digital literacy skills to access online healthcare resources. And not just for herself, but to support her Mom’s cancer journey, too. She was kind enough to share the details of her experience in the following video:

Andrea Caldwell Testimonial | I Hope That Other People Join In from Patient Empowerment Network on Vimeo.

Andrea enthusiastically encourages others to participate in these free programs:

“I recently had an emergency situation during which time I wasn’t able to use my cell phone. Thanks to the training I received from PEN’s virtual digital sherpa™ program, I was able to use my computer to communicate, which I never would have thought to do before. Thanks to this technology training program, I’m now reconnected to the world.”

If you know an older cancer patient who needs a technology skills boost, tell them about Digitally Empowered™, our free and easy-to-complete course that develops the skills necessary to harness online health resources, including telehealth. 

These and all of our programs are made possible thanks to the generosity of Patient Empowerment Network donors and volunteers like you.

Welcome to Digitally Empowered™!

A New Patient Empowerment Course from PEN

Empowered patients who are well-informed and take an active role in their care tend to have better health outcomes. With telehealth, patient portals, and research and treatment information all online, access to the internet has become critical to receiving quality care. However, the ability to access technology is one of the biggest hurdles to learning about health and making healthcare decisions. This hurdle creates a digital divide in healthcare where patients with access to the internet are more likely to have better treatment outcomes than patients who don’t have the skills or ability to use technology to their benefit. That’s a problem, but Patient Empowerment Network (PEN) has created a solution.

Digitally Empowered is a free and easy-to-complete, video-based course, created by PEN and made possible with the support and collaboration of Pfizer Oncology, that provides an opportunity for everyone to have equal access to healthcare resources on the internet. The course helps patients, and those who care for them, develop the skills necessary to access and use online health and support tools.

There is a clear need for programs like Digitally Empowered. Only 12 percent of adults in the United States are able to obtain and understand the basic health information and services needed to make informed decisions about their care. Older patients are particularly vulnerable when it comes to health literacy because many patients age 65 and older don’t have digital technology skills. Digitally Empowered is specifically tailored to help older cancer patients, and those caring for them, to be more tech-savvy, but the course has beneficial information to anyone who needs help managing their healthcare online, or who would like to better use online resources to improve treatment outcomes.

Research shows that patients make the best decisions about their care when they are armed with credible information. Patients who are able to access reliable and up-to-date information about cancer treatments can work with their care teams to receive the most personalized care and the best possible outcomes. The Digitally Empowered course teaches patients how to get the latest credible information, research their conditions, ask pertinent questions, and take an active role in their care and treatment. The course teaches patients how to use the internet, social media, and mobile applications to help them search for information and to connect with other patients. No matter where they are in their cancer journey, the course will help cancer patients and care partners gain access to better cancer care.

To enroll in the Digitally Empowered course, patients will need an email address. After a few simple steps to create login information there are clear instructions to guide patients through the program. Available in English and Spanish, the course is easy-to-follow, and is divided into ten parts, called modules. In each module, patients watch a short video, review a resource guide, and take a simple quiz to reinforce what was learned. While it’s not necessary to complete the course all in one sitting, the modules are meant to be completed in chronological order and take about ten minutes or less to complete. The entire course takes less than 90 minutes and automatically saves your progress along the way. If you need to leave the course at any time, you will pick up where you left off when you log back in.

In the first module, an animated version of PEN Director of Digital Communications and Engagement, Kara Rayburn, provides an introduction to the course and an overview of PEN’s mission to empower cancer patients and their care partners. She also introduces Carmen and Quincy, the program’s digital tutors. Carmen guides the course through each module and Quincy explains all the technical processes taught. The subsequent lessons take you through the rest of the course objectives which include learning how to access the internet, identifying credible resources and websites, learning the benefits of patient portals, using social media to connect and learn, navigating healthcare with mobile devices, using applications (apps) for convenience and fun, learning how to use telemedicine, and accessing and joining online support communities.

After completing all three steps of each module, participants earn a badge, and after completing all ten modules, they get a certificate of completion. Patients also receive emails of encouragement after the completion of each module. In the end patients will have gained the skills they need to use the internet to empower their cancer journey, but they will also be able to get continued support. Course participants are encouraged to join the Digitally Empowered Facebook group and to sign up for the Digitally Empowered newsletter. In addition, course participants can return to the modules to watch the videos and access, or download, the review guides at any time. There is also a Frequently Asked Questions page should anyone get stuck or need help along the way.

The course equips patients with the ability to research their diagnosis, navigate telehealth, and forge beneficial connections to others in the cancer community, all of which could lead to life-changing outcomes. Digitally Empowered was created to help all patients become knowledgeable about their diseases, because where there is knowledge there are choices, and where there are choices there is hope.

Hope for better health outcomes and the Digitally Empowered course are both available at iamdigitallyempowered.org, and additional support provided by Pfizer can be found at thisislivingwithcancer.com.

Questions Answered About digital sherpa™

After participating in a digital sherpa™ workshop with Cancer Support Community in Ann Arbor, MI, we sat down with a student volunteer (“sherpa”) and a cancer patient (“slimber”) and asked about their experience.

Climber

1. What do you think are the benefits of social media and technology to people with cancer and care partners?

Personally, I think that technology is very helpful. To be able to communicate with a doctor’s office outside of work hours helps when I have a non-urgent question.  
I’m still figuring out how social media is helpful. Doctor’s are so busy that to ask for interaction in real-time would be unfair, to them and to patients. However, it is helpful to be able to communicate in real-time with other patients and caregivers who are going through the same type of issues.  

2. What do you think are the main barriers to people using technology to assist them on their cancer journey?

A main barrier from my perspective is that when someone get diagnosed with cancer, there is a sudden jump from very few doctors to too many doctors and offices. Suddenly, everyone wants to give me information, get information from me and know how I am. This is not all attainable from one place, so many of web addresses suddenly need to be found, remembered, passwords added and remembered, etc. With treatment brain fog, fatigue or age related issues, this is very difficult. 

3. What are your thoughts on working with the students today? Do you think each generation has something to learn/teach other generations? If so, what?

Working with the students was great! Their familiarity with the web and the pages was very helpful.  
We do have things to teach each other and points of contact and building communication with common ground start the process.

4. Was there anything that surprised you about today’s workshop?

How easy it was and how much information is available.

5. What is one thing (or more!) that you learned at today’s workshop?

I learned about the Registry, Healthtunes, and , although I don’t need it now, ridesharing.


sherpa

1. Why did you volunteer with the digital sherpa™ Program?

I volunteered with the digital sherpa™ Program because I resonated with the mission of the program – to empower patients. Although patients go to health care facilities to address concerns about their own bodies, the complexities of treatment, especially cancer treatment, can pose barriers to playing an active role in their care. I think the digital sherpa™ Program is a great way to help patients access resources in their journey and connect with other people with similar experiences. I also thought the sherpa Program was an easy way to help others, especially since I’ve grown up with technology all around me.

2. What surprised you the most about your experience today?

What surprised me the most was how the man I was paired with held onto every word I spoke and looked at me expectantly. When I talked about the resources provided by the cancer support community and how to fill out the demographic information, he listened whole-heartedly and I felt the weight of my words. It was a unique experience taking the lead and being able to give advice.

3. What are your thoughts on working with the participants today? Do you think each generation has something to learn from/teach other generations? If so, what?

I enjoyed working with the participants because I was paired with a man who was his wife’s caregiver. When he was unsure about whether to join an online support group, he turned to her. I think our generation can learn from the older generation that sometimes less is more, and it is important to keep your information secure. When I asked my participant if he wanted the website to save his password he said no because a person shouldn’t stay logged in.

4. Based on what you experienced today, what do you think are the main barriers to older people using technology to assist them on their cancer journey?

One barrier is not having a person to turn to for help or the ability to search for solutions on the internet. Typically if I have trouble with a device, I google to try to find a solution. Another barrier is it’s constantly changing – apps, software updates, etc, so they may get used to one piece of technology, and then it changes.

5. Based on what you experienced today, what do you think are the benefits of social media and technology to people with cancer and their care partners?

During my experience, I saw a more clear benefit of technology rather than social media. One woman was able to save pdfs of articles from WebMD to the home screen of her iPad, and another man was able to join the cancer support community facebook page. Also, knowing how to access online resources such as chats, and support from licensed counselors through the phone is very beneficial as well.

6. Is there anything that you learned or saw today that changed any opinions or assumptions you may have had about people living with cancer?

Working with the participants exposed an assumption I had related to people with cancer: people with cancer as very sick and having to deal with numerous medications. Although I didn’t know what medications the participants I was paired with were on, I did notice that they were all in different stages of health. Also, I learned that cancer patients express a lot of agency when deciding with resources to take advantage of. From the list from the digital sherpa™ “cheat sheet,” only a few were of interest to my participant’s wife (patient) because she already has been receiving a lot of emails.

digital sherpa™ Program Featured on Change Together

Editor’s Note: Our digital sherpa™ was featured on Astellas’s Change Together blog and was originally published here.


Advocacy groups join forces to provide digital health education for cancer patients

As the saying goes, there’s no point reinventing the wheel – which is why two patient advocacy groups driving for patient empowerment have teamed up on a program of digital health education for cancer patients and their caregivers.

The Patient Empowerment Network’s (PEN) digital sherpa™ program, in which tech-savvy young people teach older cancer patients to access online health information and resources, has been piloted by three Cancer Support Community (CSC) affiliate groups.

digital sherpa™ workshops, which first featured on Change Together earlier this year, proved extremely popular when trialed with CSC groups in San Francisco, Dallas and Los Angeles.

Katie Dimond, Program Manager at CSC said she knew it was a perfect partnership as soon as she discussed the opportunity with PEN’s Executive Director, Andrea Conners.

Perfect partnership

“We have an existing population of less tech-savvy people who would really benefit, and I knew immediately it would work and that there would be an interest for this,” she said.

“We knew some of our affiliate groups would love to do something like this, but might not have the resources. To be able to give them everything they need to provide for their existing populations and even get new people in is a win/win for everyone.”

And they were right. In fact, the pilots went so well that the two groups are now discussing the possibility of rolling this out to more CSC affiliate groups next year.

“We really want to empower patients and part of that is our online resources – making sure people are aware of the type of cancer they have; the side effects of treatment and they can be part of the decision-making process. Working with PEN is such a great partnership,” she said.

Shannon La Cava, PsyD, Program Director at Cancer Support Community’s Los Angeles affiliate group agreed the program was a perfect fit.

“I was very interested because it sounded like it would be a great benefit to our members. The average age of our members is 55 and people often come in to ask how to get onto online services,” she said.

While PEN recruited the volunteer sherpas, the CSC groups organized and marketed the events.

Shannon’s colleague, Allison Brown, LCSW, was at the Los Angeles workshop which saw almost 40 people receive a lesson in patient portals, digital health information and even social media from UCLA and USC student volunteers.

“The students did a great job and worked with what the members were asking for. It was really nice to watch the students and our members work together,” she said.

Shannon added that this opportunity for the volunteers and their typically older tech trainees to connect was an unintentional benefit of the workshops.

Joy of collaboration

Andrea said she was delighted to be able to work so closely with the organization and said the collaboration was a “mutually beneficial relationship”.

“The mission of CSC is very much aligned with our mission, and we really admire and respect what they do and how they do it.”

“CSC is providing quality programming that will help patients become more health literate and it wants to help them access those resources – and we just so happen to have a program that does exactly that,” she said.

Attendees at a digital sherpa™ workshop:

Digital SherpaDigital Sherpa

digital sherpa™ Press Release

Digital Sherpa™ Press Release

Media Advisory

Two upcoming digital sherpa™ Workshops offer unique support to

local cancer patients

Fort Myers, FL – March 9, 2017… In partnership with Patient Empowerment Network (PEN) and Florida Gulf Coast University (FGCU), Florida Cancer Specialists & Research Institute (FCS) is pleased to announce two upcoming digital sherpa™ Workshops on Thursday, March 16, 2017 and Thursday, April 27, 2017 at its Gladiolus Cancer Center (8260 Gladiolus Drive, Fort Myers, FL). The workshops are open to FCS patients, caregivers and friends.

Hosted by PEN, the digital sherpa™ Program aims to help cancer patients and their families become more tech-savvy. The program’s workshops educate patients and caregivers in basic internet and social media skills to help them in their search for information about their illness and support for them and their families.

Cancer patients, known as “climbers” in the program, are paired with FGCU students, known as “sherpas”, who have been specially trained by PEN to offer skills such as:

  • Internet use (such as opening an email account, navigating Google, and creating and remembering passwords)
  • Social media skills (including Facebook, Twitter and Instagram)
  • Creating virtual connections with other cancer patients via on-line patient support communities
  • How to use apps such as Uber and other ride-share services to get to appointments

Research suggests that many older cancer patients lack basic internet and social media skills which creates an obstacle for them when they try to go on-line to access information about their illness, or support from other patients and patient advocacy groups.[i] Often they become overwhelmed with the abundance of information and do not know how or where to find the help they need.

“By producing this program, we want to show what can be done to help cancer patients and their families become more tech-savvy, more educated, more self-confident and more in control of their cancer journey,” said Joan Justice, PEN’s Executive Director.  “By pairing digital natives (FGCU students) with the older generation, we hope to create an empathetic and powerful relationship that is an asset to any community.”

“We are pleased to partner with PEN and FGCU to offer this innovative program to our patients,” said FCS CEO Bradley Prechtl. “Ensuring that our patients and their families know how to access helpful information online is a big plus.”

Dr. William Harwin, Founder and President of Florida Cancer Specialists, added, “Our collaboration with PEN and FGCU to provide this unique program reflects our mission of patient-centered care. The more education we can provide to patients, their families and caregivers, the better equipped they are to be active participants in their own healthcare.”

“The digital sherpa™ Program is beneficial to both the cancer patients and the Florida Gulf Coast University students involved.  The patients gain technological knowledge that connects them with up-to-date information pertaining to early detection or successful treatments; the FGCU students acquire valuable and transferrable skills such as the ability to communicate effectively, problem solve, and build relationships – which was the best part of all!” said Jessica Rhea, Director of Community Engagement at Florida Gulf Coast University.

“I enjoyed the casual, fun atmosphere and being able to ask the students about the technology questions I have rather than having to ask my children for help,” said one Digital “Climber” following a recent workshop.

The Climber’s Digital “sherpa” added, “The barrier of age was broken between us. I loved the connection and bond we made!”

Workshops will be held on March 16 and April 27 from 2:30-4:30PM at Florida Cancer Specialists and Research Institute, 8260 Gladiolus Drive, Fort Myers, FL 33908.

 

About Patient Empowerment Network

Our mission is to fortify cancer patients and caregivers globally with knowledge and tools, boosting their confidence and putting them in control of their healthcare journey and assisting them to get the state-of-the-art, personalized care they deserve. For more information, please visit our website http://www.powerfulpatients.org/pen/

Watch our video to learn more about the digital sherpa™ Program https://vimeo.com/241755461

About Florida Cancer Specialists & Research Institute:

Founded in 1984, Florida Cancer Specialists & Research Institute (FCS) is the largest independent medical oncology/hematology practice in the United States. With over 200 physicians, 160 nurse practitioners and physician assistants and nearly 100 locations in our network, we are committed to providing world-class cancer care in community-based settings close to home.

Recognized by the American Society of Clinical Oncology (ASCO) with a national Clinical Trials Participation Award, FCS offers patients access to more clinical trials than any private oncology practice in Florida. 84% of new cancer drugs approved in 2016 for use in the U.S. were studied in clinical trials conducted with FCS participation*. Our physicians are consistently ranked nationally as Top Doctors by U.S. News & World Report Trained in such prestigious medical schools and research institutes as Duke, Stanford, Harvard, Emory, M.D. Anderson, and Memorial Sloan-Kettering, the physicians of Florida Cancer Specialists provide leadership and consultation in the state’s leading hospitals.

FCS serves patients on the Gulf Coast from Naples to the greater Tampa Bay area, north as far as Tallahassee, in Orlando and surrounding Central Florida communities, and on the East Coast in Daytona/Palm Coast, Vero Beach/Sebastian and in Palm Beach County.

Florida Cancer Specialists has built a national reputation for excellence that is reflected in exceptional and compassionate patient care, driven by innovative clinical research and cutting-edge technologies that help advance targeted treatments and genetically-based immunotherapies, and embodied by our outstanding team of highly-trained and dedicated physicians, clinicians and staff.

 *Prior to approval

Established to fill a regional need for higher education opportunities in Southwest Florida, FGCU has flourished since opening its first classrooms in 1997, and now attracts students from all over the United States and abroad to Fort Myers. The university has achieved national prominence in academics, environmental sustainability and service-learning as well as in athletics, where FGCU earned the nickname “Dunk City” during its historic run in the 2013 NCAA Men’s Basketball Championship Tournament. FGCU’s unique natural setting between the Florida Everglades and the Gulf of Mexico creates a living laboratory and a lively campus interwoven with native flora and fauna. It also provides an engaging home to a diverse community of more than 15,000 undergraduate and graduate students who advance their learning in state-of-the-art classrooms and labs; they collaborate with faculty to produce new knowledge that benefits the environment, education and community life.

For Media Inquiries please contact: 

Patient Empowerment Network

Andrea Conners, Programs Director

andrea@powerfulpatients.org

844-307-1009

Florida Cancer Specialists & Research Institute

Shelly Glenn, Chief Marketing & Sales Officer

sglenn@flcancer.com

770-365-6168

Chappell Roberts

Chris Wilkerson

cwilkerson@chappellroberts.com

813-857-7051

Ganick Communications, Inc.

Elaine Ganick

elaine@ganick.com

615-377-7877

Reference

[i] Smith, Aaron. (2014) Older Adults and Technology Use. Pew Research Center

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