The power of collaboration: Partnering with other patient advocacy groups

Jan 9, 2020
The power of collaboration: Partnering with other patient advocacy groups

Everyone in the healthcare sector is working towards a common aim – helping people get the most out of life – which is why collaboration is so important to the team at the Patient Empowerment Network (PEN).

Recently, they have partnered with organizations including the Cancer Support Community, the Leukemia & Lymphoma Society (LLS) and the Aplastic Anemia and MDS International Foundation (AAMDS) to develop materials and deliver services.

“Our strategy has been to create close partnerships with other groups, whether they be pan-cancer groups like ours or disease-specific organizations,” says PEN’s Executive Director Andrea Conners. “There are so many advocacy groups working in the cancer space, we don’t want to create more noise for patients who are already overwhelmed.”

Expanding your reach

Indeed, says Kara Rayburn, PEN’s Director of Digital Communications and Engagement, working with others has helped the group overcome its biggest challenge of getting patient trusted information out to the people who need it by expanding the group’s reach.

“We work closely with LLS and AAMDS, as well as many disease-specific organizations. This helps us to create content and showcase their experts, as well as to get our materials and programs out to more patients,” she says.

The advocacy group is also working with the Moffitt Cancer Center in Tampa, Florida, where every patient is visited by a PEN-backed Digital Sherpa.

Being a Digital Sherpa

“The program is targeted mainly at those who are 65 or older and who aren’t necessarily digital natives. It pairs them with volunteer college students who teach them how to access health information online. It’s pretty incredible because it’s a win-win for both the volunteer as well as the participant,” says Andrea.

The program has been running since late 2016 and has been so successful that PEN is now looking to expand it by partnering with more medical centers across the country.

“We want to build people in terms of their advocacy and their confidence and point them to the organizations that can help their specific needs. We want to work with other advocacy groups. We want to amplify their efforts with the goal of helping people become empowered self-advocates.

“The more we can foster collaboration, the stronger we are going to be as advocacy organizations and the more benefit we bring to patients and their care partners,” Andrea finishes. “So, let’s look at what we’re doing and figure out who we can partner with to extend our reach, make our programs better and work more efficiently with the limited resources we all have.”

Read more about the Digital Sherpa program in our Change Together article published earlier on this year. https://www.changetogether.com/oncology/advocacy-groups-digital-health-education

The power of collaboration: Partnering with other patient advocacy groups

Andrea Conners is Programs Director for the Patient Empowerment Network.  Patient Empowerment Network’s mission is to fortify cancer patients and care partners with knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them with receiving the best, most personalized care available. For more information, please visit powerfulpatients.org

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