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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

Finding The Right Oncologist For You

finding-the-right-oncologist-for-youWhen you put your life in someone else’s hands, you need to feel completely comfortable and confident with that person – especially when that person is your oncologist. How do you go about finding the right one for you?

One of the best ways to find an oncologist is through referrals from people you trust, such as your primary care physician, family, friends, local hospitals or your insurance company. Many insurance plans allow their members to search doctors by name or specialty. The American Society of Clinical Oncology (ASCO) provides a free, searchable database of ASCO member oncologists. These doctors opt to make their information available to the public.

Other medical associations offering searchable databases:

Once you have collected and written down a few possible oncologists’ names, remember to ask yourself these three questions:

What are their credentials?

Board certification is one of the most important factors you should consider when choosing an oncologist. It assures you that the doctor has the necessary training, skills, and experience to provide healthcare in oncology. Additionally, choose a doctor that treats your specific type of cancer and has related experience with that disease. The more experience the doctor has with a certain cancer, the better your outcome will likely be. Your doctor’s hospital is your hospital, so don’t forget to research the quality of care offered at that location as well.

What blend of traits are important to you?

Languages spoken, gender, and education may be important to you. You may also have strong feelings about personality and bedside manner. Some people want their doctors to have a business-like manner, while others value a doctor who can help with their emotional health as well as their medical needs. Whatever your preferences, the most important thing is finding an oncologist with whom you are comfortable.

What is their communication style?

Choose a doctor that values and respects your questions and answers you in a way that you can understand. Clarity and candor are highly important characteristics for a doctor. Make sure that your doctor values both shared decision-making and the best available clinical evidence, as well as your personal values and preferences throughout your treatment.

Once you have found a doctor that meets all the above criteria, ask him or her for an introductory phone call before scheduling an appointment. You should interview your potential oncologist the same way you would interview a lawyer or an accountant. Don’t be afraid to set-up introductory calls or appointments with a few oncologists for comparison. You may also want to consider the size of your doctor’s staff and accessibility to clinical trials.

Alongside considering size of practice, clinical trials or proximity to home, make certain that your new oncologist is someone you can work closely with and trust. Your new doctor will become the most valuable member of your cancer team, so it is imperative that you choose a doctor with whom you are comfortable.


Resources:

http://www.cancer.net

https://www.healthgrades.com/explore/8-tips-for-choosing-an-oncologist

http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/choosing-a-doctor-and-a-hospital

Being Your Own Advocate

Tamara Lobban-Jones, Patient Power Producer and Lung Cancer Community Manager, and Lisa Goldman, a stage 4 non-small cell adenocarcinoma patient discuss why cancer patients need to be their own advocate.

They discuss the need for doctors and patients to communicate in new ways that respect the balance between a doctor’s expertise and patients’ own thoughts and knowledge. With the ever increasing developments in cancer research, it has become harder for oncologists to understand everything about each specialized form of a certain cancer. As Lisa points out, all that patients need to know about is their own cancer, so they can dedicate more time and energy into researching than a doctor may be able to. Being an active participant in your cancer journey is the best way to feel confident in your decision making.

Being Your Own Advocate from Patient Empowerment Network on Vimeo.

Cindy Chmielewski Talks About Clinical Trials

Cindy Chmielewski, a leader in multiple myeloma patient activism and empowerment, talks with Carol Preston about what she has learned about clinical trials from being a multiple myeloma patient. Cindy believes that patients should seriously consider trials as an excellent treatment option and should discuss the availability of trials with their medical team. Carol and Cindy discuss tips on how to become a more informed patient through multiple platform research, such as online resources, social media or attending seminars.

Watch the full video below to learn more from a forefront member in patient education advocacy.

Cindy Chmielewski talks about clinical trials from Patient Empowerment Network on Vimeo.