Community Service Society of New York

Unlike other health care stakeholders, individual patients do not have the resources, influence, and networks that support effective, ongoing representation in health system reform or policymaking.

Health care consumers want to make the system more attuned and responsive to their needs. In New York State, health care advocacy has traditionally been led by a handful of professional and expert consumer representatives. Few patients have the time, skills, or opportunity to engage in more extended advocacy. Professional consumer representatives have achieved some success, but could themselves benefit from the backing of and engagement with a broader array of the public. To address these gaps, a more intentional platform for patients is needed to share their experiences and objectives. Training is also needed to help patients engage in collective advocacy to shape and achieve those objectives. In 2018, NYHealth awarded the Community Service Society of New York (CSS) a grant to amplify the voices of patients and build their advocacy capacity.

Under this grant, CSS launched the We the Patients NY initiative to empower consumers to speak for themselves about their experiences and their preferences for policy solutions. We the Patients NY identified, organized, and trained patients to advocate for health care system reforms. A digital organizer created a strategy to tap into and enlist New Yorkers already engaged in these topics on social media. The digital coordinator identified and trained participants to engage in higher-level advocacy roles, such as testifying at meetings with policymakers or joining government task forces. As a test case for this model of advocacy, a cohort of trained consumers engaged in a campaign to simplify medical billing in New York State. This campaign pushed for an itemized, standardized bill format to be used by all hospitals in New York State, so that patients can easily read and understand their bills, regardless of where they receive care. We the Patients NY also created a mobile-optimized website that contained resources and served as a platform for patients to take action and share their stories.