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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

239-728-1202

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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