Community Service Society of New York

Patient engagement and consumer empowerment practices are increasingly recognized as integral components of the health system.

However, few patients have the time, skills, or resources to engage in more extensive advocacy with decision-makers. In 2018, NYHealth awarded the Community Service Society of New York (CSS) a grant to empower consumers to speak for themselves about their experiences and their preferences for policy solutions. 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. Since its launch, We the Patients NY has had a demonstrated record of success impacting New York State health policy. In 2020, NYHealth awarded CSS a second grant to further amplify the voices of patients and build their capacity to advocate effectively for health care policy change.

Under this grant, CSS expanded its patient engagement, advocacy training, and strategies for patient-centric policy reform. CSS developed a centralized campaign website and increased its presence on social media for patients to speak out about their experiences with critical issues, including medical billing; lack of access to care; cost and quality of care; discrimination; and the COVID-19 pandemic. We the Patients NY collaborated with community partners to provide education and advocacy trainings and equip patients with tools for sharing their stories. Consumers also learned how to take action on policy education campaigns, with a focus on continued medical billing reform, the NYHealthcareCompare website and other government transparency initiatives, and patient issues resulting from the COVID-19 pandemic.