The Patient Empowerment Network (PEN) is a non-profit organization working on behalf of cancer patients and care partners.
For more than a decade, PEN has been improving treatment outcomes and health equity for cancer patients and care partners at every step of their journey.
Andrea Conners, Executive Director of PEN, explains how PEN stands out from other patient networks. “We understand and know, firsthand, how a cancer diagnosis can overwhelm both patients and their loved ones. With patients and their families in mind, we embarked on a path toward empowering them to ask the right questions at the right time for improved care,” Conners says.
PEN focuses to empower patients and care partners by taking patient education a step further than most other networks. Conner emphasizes, “We educate, then activate cancer patients and their care partners to become shared-decision makers with their healthcare teams.” This method helps patients access current and personalized care, which empowers patients to achieve better treatment and health outcomes. When surveying, patients following PEN program often describe the experience as enriching and the strength of their self-advocacy growing. They have more of their questions answered during appointments, which without guidance can be intimidating and challenging.
PEN offers programs aimed to enhance patient health literacy as well, enabling shared decision-making to become possible and provides informational and educational resources. In 2020, PEN adopted the Path to Empower Framework to aid in supporting its patient network by recognizing patients’ commonalities. “Based on the National Cancer Institute’s Cancer Experience Map, we have outlined six commonalities: newly diagnosed, testing, treatment and clinical trials, access and affordability, whole-patient support and what’s next. Within the framework’s six categories, you’ll find easy-to-understand and reliable information,” explains Conners.
On top of providing detailed information based on diagnosis and key topic areas, PEN also provides a Digitally Empowered™ program. This program is a self-paced module video course that helps patients, and those who care for them, develop the skills necessary to access and use online health and support tools. Course participants can return to the modules to watch the videos and access, or download, the review guides at any time. To continue learning, participants are encouraged to join the Digitally Empowered™ Facebook group and to sign up for the Digitally Empowered™ newsletter.
Through all of their programs, PEN ensures participants feel supported and one way they do that is through their PEN Network Managers providing support, creating up-to-date and personalized content, and encouraging connection through various platforms including PEN’s support text-line, email, and social media. Via this program, patients, care partners and families can get help from people who have been there.
“Without sufficient support during a cancer journey, patients and care partners can become overwhelmed and too many are unaware of free online resources available to them,” Conners remarks. PEN provides guidance in a variety of programs and resources that stand apart from other networks. Their attention to building self-advocacy skills and reinforcing a community of learning and empowerment makes all the difference through a cancer journey. To learn more about PEN, please visit their website for more information powerfulpatients.org. Learn more and access The Foundation for Women’s Cancer educational materials here.