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

Jan 10, 2019
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

 

 

 

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

Astellas Patient Advocacy is a function within Corporate Affairs at Astellas that focuses on creating, building and maintaining third-party relationships. We serve as a conduit between Astellas and external stakeholders to help improve patient outcomes, improve access issues and address patients’ unmet needs head on.

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