Community Service Society of New York

Although patient engagement and consumer empowerment practices are now recognized as necessary components of the health system, few patients have the time, skills, or resources to engage in more extensive advocacy with decision-makers.

In New York State, advocacy has traditionally been led by a handful of professional consumer representatives, but patients need to be empowered and prepared to speak up for their own interests. With NYHealth support, the Community Service Society of New York (CSS) launched We the Patients NY—a digital platform for patients to share their stories and advocate for a more patient-centered health care system. In 2020, NYHealth awarded CSS a second grant to continue to amplify the voices of patients and build their capacity to advocate effectively for health care policy change. In 2021, NYHealth awarded CSS a grant to further support the We the Patients NY campaign to engage and train patients in advocating for a patient-centered health system.

Under this grant, CSS will implement a three-pronged approach to further advance We the Patients NY, with input from an expert advisory group. It will deepen its online and social media presence to generate engagement with 200,000 consumers, reporters, and decision-makers. CSS will also train patients interested in taking on higher-level advocacy roles, holding trainings that will cover basic advocacy tools for sharing stories and practical resources. This cadre of patient activists will be primed to engage with professional consumer advocacy organizations and describe their experiences with care, including issues related to medical billing, access, discrimination, and COVID-19. Finally, CSS will continue to elevate public discourse on policy reform through public education focused on medical billing, patient financial assistance, and patient issues resulting from the COVID-19 pandemic.