Rare Cancer Patient and Advocate Creates Nonprofit, The Patients' Project, to Address Health Literacy

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Late stage cancer patient and advocate uses navigational and educational skills acquired during her own health journey as the basis for a health literacy program which includes an introduction to health and the Affordable Care Act on the Internet. The program will launch the same day the Affordable Care Act goes into effect, October 1, 2013.

we expect a “health literacy tsunami” based on a 2008 National Assessment of Adult Literacy that 38% of adults living in the US (81 million people) are health illiterate.

After being diagnosed with metastatic carcinoid cancer, patient advocate Suzi Garber learned there was no cure for her cancer or any treatment available locally. This life-altering event afforded her the opportunity to develop powerful methodologies for learning, coping, and communicating in a health care environment. She is channeling these skills into a curriculum for the new nonprofit “The Patients’ Project” (TPP) to teach these skills to others, targeting populations with low health literacy such as immigrants, minorities, and the Low Education and English as a Second Language populations (LEP & ESL). The nonprofit’s heartbeat would be a community-based voice for health literacy. TPP’s services would be available initially as an outreach program in partnership with community-based organizations such as medical centers, clinics, senior living centers, churches, and activity centers. The program's launch is scheduled for October 1, 2013, when the Affordable Care Act goes into effect. The program will be a timely and important resource for those who are health illiterate and have little or no Internet skills since they will have to sign up and select their health insurance on a government Internet site. Garber has said she expects a “health literacy tsunami” based on a 2008 National Assessment of Adult Literacy which revealed that 38% of adults living in the US (81 million people) are health illiterate.

The three-part learning platform is based on Garber’s journey as a chronically-ill cancer and cardiac patient. Instructional seminars, hands-on Internet instruction, and back-end health coaching support would provide the basic knowledge and skills to attain health literacy. The instructional seminars would engage clients by demonstrating real life solutions to such critical issues as how to communicate with providers, obtaining a doctor’s appointment, preparing for an office visit, understanding doctors’ instructions, organizing and archiving health documents, interpreting a food or prescription label, managing a medical crisis, etc. The next learning module would be for hands-on Internet skills addressing how to find reliable, authentic information, use of search engines, and an introduction to the “Obamacare” website. After completion of the program, clients would be prepared to make informed decisions for their family’s health and health insurance. Health coaches would be available to those who have completed the program but need additional or specialized support.

Here are some sobering statistics. The National Center for Education Statistics reports these facts: 22% of the adult population (16 and over) in Philadelphia lack basic literacy skills. This is the highest rate in the state and accounts for 250,000 individuals. The national average is much lower at 14.5 %. It follows that this population would also be illiterate about health issues, disease prevention and medical compliance. Illiteracy is a major factor in the epidemic of an overweight population fraught with diabetes, drug use, high blood pressure and other public health issues. Therefore, teaching health literacy skills would reduce health costs through patients becoming educated, engaged, and empowered. It’s daunting that in 5 months, millions of those who will be newly insured will access the system and need assistance in navigating through very unfamiliar territory. Many will be severely handicapped by their lack of literacy. The cost of low health literacy in the U.S. is estimated between $106-$238 billion annually. Garber hopes that programs like TPP will result in better outcomes, fewer medical errors, healthier patients and a reduction in the overall cost of the nation's healthcare In the near future. The Patients’ Project will continue its patient advocacy efforts tandem to the Affordable Care Act launch.

Currently, the Patients’ Project is seeking those qualified to be health coaches, those wishing to participate as seminar leaders, and strong, community-based partnerships. Or, if you are interested in hearing about healthcare from a patient advocate’s point of view, please contact Suzi @ info(at)phillycarcinoid.org.

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Suzi Garber
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