NPAF Launches Self-Advocacy Learning Platform

National Patient Advocate Foundation (NPAF), a national nonprofit organization dedicated to amplifying the voices of patients and advocating for better access to affordable, equitable, quality care, today announced a new self-advocacy learning platform specifically designed to educate patients and caregivers on the power of their own voices.

“This platform is incredibly personal to me, because it goes straight to the heart of why I – and so many others – became an advocate,” said Gwen Darien, executive vice president of patient advocacy, engagement and education. “It often seems like we can’t control much in our health care journey, but when we strengthen and share our voices, we find our power.”

The series of modules, Advocating for Yourself and Others, are part of the NPAF Advocacy Curriculum, which is designed for advocates to sharpen their skills while being exposed to a variety of perspectives across the patient advocacy curriculum. In the self-advocacy modules, users will receive a foundation for communicating with their health care team, whether on behalf of themselves or as a caregiver. With experienced advocates leading the modules, users will also learn how to tell their medical story effectively and in the short amount of time often allocated to a clinical encounter.

Along with Gwen Darien, the modules will be led by Beverly Rogers, a longtime advocate, cancer survivor, caregiver; and Olga Lucia Torres, JD, a lawyer, patient advocate and lecturer in Narrative Medicine at Columbia University.

“As we continuously strive to empower patients with the skills and knowledge needed to navigate our complex healthcare system, we believe that fostering self-advocacy is pivotal, ” said Jamie Trotter, associate director for patient advocacy and engagement. “Our commitment to amplifying patient voices is at the core of this initiative. We look forward to witnessing the positive impact of this curriculum in the development of advocacy skills on our learners.”

The modules can be accessed through the NPAF website. A description of the new modules is available below.

How to Best Tell Your Medical Story

Many patients often feel challenged and intimidated by the small amount of time allotted for interactions with providers. Having the skills to efficiently articulate what matters most to you or your loved one is a key skill in self advocacy. In this module led by attorney and patient advocate Olga Lucia Torres, learners will understand what it means to be a “professional patient” and effectively tell your medical story.

Introduction to Self- Advocacy

Gwen Darien, executive vice president of patient advocacy, education and engagement, and patient advocate Beverly Rogers, will lead an introduction to self-advocacy, providing learners with a foundation for communicating what matters most to them and the people they care for. This module will include a guide for patients to explore the many responsibilities and ethical obligations patient advocates face in their work in advocating for person-centered health care.

Beyond Self-Advocacy

Reflecting on what you have learned through your lived experiences within health care and these series of modules centered in self-advocacy, this next module will provide some next steps to continue to activate in your journey in patient advocacy. Jamie Trotter, associate director of patient advocacy, will provide an introduction to patient advocacy, introducing learners to the full, 13-module patient advocacy curriculum. Learners will assess the three types of advocacy and how self-advocacy fits into this model.