Empowering Health Care Consumers

Grantee Name

Community Service Society of New York

Funding Area

Empowering Health Care Consumers

Publication Date

February 2021

Grant Amount

$300,000

Grant Date:

December 2018 - June 2020

Patient engagement and consumer empowerment are increasingly recognized as integral components of a high-functioning health system.

They require substantial leadership by consumer organizations as well as consumer representation on advisory and policymaking bodies. However, few patients have the time, skills, or resources to engage in more extended advocacy before decision-makers. There have historically been few consumer-driven bodies that collectively represent the patient voice. In New York State, advocacy has traditionally been led by a handful of professional and expert consumer representatives, who need support to engage with a broader array of the public. Patients should have a more intentional platform to share their experiences and preferences. They also need more training to engage in collective advocacy to shape and achieve those objectives.

NYSHealth awarded a grant to the Community Service Society of New York (CSS) to amplify the voices of patients and build their advocacy capacity through the We The Patients NY initiative.

Outcomes and Lessons Learned

  • Developed and launched We The Patients NY, a digital campaign to identify, engage, and train patients to share their stories and advocate for a more patient-centered health care system, which has resulted in:
    • An interactive website that engaged 8,800 consumers;
    • Mentions in more than 4 million social media feeds and the generation of 3,000 pieces of social media content;
    • More than 1 million unique consumer content views;
    • More than 160,000 user engagements with content; and
    • The collection of 48 stories and a total of 65 blog posts by consumers.
  • Recruited and trained 600 consumer advocates to take on higher-level advocacy roles by sharing their experiences with the health care system and addressing a range of issues such as:
    • Lack of access to health care;
    • Cost and quality of care;
    • Medical harm;
    • Discrimination and health inequities; and
    • Bureaucratic obstacles.
  • Collaborated with Health Care For All New York (HCFANY) and other campaign partners to educate regulators and elected officials about medical billing problems in New York State.
  • Garnered wide media coverage with 37 press stories and mentions of consumer experiences in outlets such as The New York Times, The Atlantic, Kaiser Health News, Newsday, Crain’s New York Business, Gothamist, and City and State New York.
  • Built stakeholder coalitions and organized consumer trainings with an array of partners, including member organizations, consumer advocates, and legislative representatives.

We The Patients NY had a tangible impact on New York State health policy. For example, one of its campaign issues focused on medical billing and debt issues. In collaboration with a coalition of partners, the campaign advocated for ideas that became the foundation of the Patient Medical Debt Protection Act. Two provisions of the act have already become law: (1) the reduction of the statute of limitations for medical debt court cases; and (2) the elimination of a loophole in the State’s surprise medical billing law. We The Patients NY also successfully advocated for a monthly $100 cap on co-payments for insulin.

CSS has also highlighted problems with medical debt collection practices and inequalities in the health care system during the pandemic. Its analytic briefs include recommendations for policymakers. It also published “Mapping How New York’s Hospitals Sue Vulnerable Patients,” an interactive mapping tool and blog post with data on local hospital lawsuits against patients after discharge by county.

To build upon We The Patients NY’s initial success, NYSHealth awarded a second grant to expand its efforts to identify, engage, and train patients to advocate for a more patient-centered health system. It will continue to focus on important issues identified by consumers at the campaign’s onset, as well as engage in emerging patient concerns such as those resulting from the COVID-19 pandemic.