Project Spotlight: CAPC’s Project Equity

As an organization who focuses on amplifying patient and caregiver voices, we were thrilled when our partners at CAPC (Center to Advance Palliative Care) asked if we had patients and caregivers in our network willing to lend their insights and expertise to help improve their educational products for health care professionals. We were even more excited when we learned that this was not just a run of the mill “let’s update our materials” but rather a super intentional approach to integrate patient voices to help clinicians better understand the lived experiences of people who have been historically marginalized.

Without hesitation, we identified several volunteers who were willing and ready to share their experiences and interactions with our healthcare system as Black Americans. NPAF volunteers were interviewed as part of their national scan and, more recently, they participated in focus groups to share their collective feedback around communication and trust.

The focus group made me feel liberated. I hope the trainings will bring awareness to issues I experience when accessing healthcare.

–Tammy Carr, NPAF advocate and patient

To help our advocates understand how their voices and experiences are supporting this important project, we invited Brittany Chambers, director of health equity and special initiatives at CAPC, to share more details about Project Equity.

What is CAPC?

The Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality, equitable health care for people living with serious illness. As the nation’s leading resource in its field, CAPC provides health care professionals and organizations with the training, tools, and technical assistance necessary to effectively meet this need.

Describe Project Equity.

The goal of CAPC’s Project Equity initiative is to create paths and tools the serious illness field can use to effectuate meaningful change that will reduce the inequities experienced by traditionally marginalized communities. Through this specific initiative, we provide practical tools, innovative practices, training and more to help the serious illness field take action to effectively improve health equity for all patients living with a serious illness.

How has involving NPAF patients and caregivers help support the work at CAPC, and more specifically Project Equity?

We believe that alongside subject matter experts, it is vital to incorporate the voices of patients and families who have lived experiences navigating the healthcare system. Speaking with three NPAF patients who identify as Black American with a serious illness – we were able to include their collective feedback and inform the content included in a comprehensive guide for improving care delivery to Black patients and families facing serious illness. The insights, transparency and recommendations from the NPAF patients has helped us to ensure the practicality and impact of the guide. The guide will be published in Spring 2024. We look forward to ongoing collaboration to ensure that we continue to center patient and family voices throughout all of our CAPC projects and initiatives.

I was extremely excited and delighted to participate in a focus group. My comments will help shape how health professionals care and interact with folks of color. It is my desire and hope that all the comments made during the focus group will be intertwined in the trainings for the future and should be used to enlighten physicians.

–Imani badie, NPAF advocate and patient

What’s next for Project Equity?

We will continue to raise awareness about a variety of inequities that affect patients with serious illness, and make the case for investment in health equity initiatives. We will develop additional technical assistance (using the input of patients and caregivers) to scale proven interventions that reduce inequities. Additionally, we aim to activate and convene health equity champions to advance improvements for patients and families facing serious illness.

To review and share CAPC’s educational products, visit CAPC.org.