Engaging Health Care Consumers in Advocacy Efforts

NYHealth awarded Health Care for All New York a grant to advance the consumer voice on issues related to promoting health information transparency and engaging patients as partners.

Grantee Name

Health Care for All New York

Funding Area

Empowering Health Care Consumers

Publication Date

November 2020

Grant Amount

$250,000

Grant Date:

September 2018–July 2020

Empowering Health Care Consumers

Health care costs for individuals and families continue to rise as consumers assume more of a financial share through high deductibles and insurance premiums.

A 2019 survey found that more than half of all New Yorkers experienced a health care affordability burden in the prior year. Consumers need additional and clearer information on health care prices and quality to inform their decision-making and to have a seat at the table when health policy decisions are being made.

As the leading and largest consumer advocacy coalition in New York State with more than 170 member organizations, Health Care for All New York (HCFANY) strives to bring the voice and concerns of everyday New Yorkers to State and federal health reform conversations. In 2018, NYHealth awarded HCFANY, through fiscal sponsor Young Invincibles, a grant to advance the consumer voice on issues related to promoting health information transparency and engaging patients as partners.

Outcomes and Lessons Learned

  • Spearheaded advocacy campaigns to address the following issues:
    • Improve insurance plan transparency on price, quality, and rates;
    • Inform State regulations or guidance that require health care providers to simplify bills they send to consumers;
    • Build on the State’s surprise billing law to eliminate existing loopholes; and
    • Ensure development of the all-payer database (APD) includes meaningful cost information for consumers and researchers.
  • Recruited consumers and consumer advocates to lead grassroots organizing and ensure that consumers are directly engaged in health reform advocacy.
  • Built stakeholder coalitions, including member organizations, consumer advocates, health plans, providers, and labor representatives, for policy panels and strategy sessions.
  • Participated in two New York State Department of Health/United Hospital Fund workgroups on the public presentation of quality data and quality indicators.

HCFANY’s coalition building and advocacy work had significant policy impact:

  • Its work on health insurance premium rate review with the New York State Department of Financial Services resulted in smaller rate increases, as well as the establishment of a searchable insurance appeals decision database.
  • The Patient Medical Debt Protection Act (PMDPA) was introduced in both the State Assembly and Senate, with a focus on medical bill simplification and expanded consumer protections.
  • Governor Cuomo released a three-point plan to require disclosure of facility fees and shorten the statute of limitations to collect medical debt.
  • Surprise billing law loopholes were closed and emergency room charges were made subject to the surprise bill law.
  • The statute of limitations for medical debt was reduced from six years to three years.
  • Consumer representation on State workgroups was secured to inform the development of a website for transparent primary care and hospital quality data.

Although policy change often takes years to secure, HCFANY demonstrated that comprehensive education and advocacy can result in the swift introduction of new policy proposals. New York State’s PMDPA was a direct result of its work. Moving forward, HCFANY will work to apply PMDPA provisions to patients with COVID-19.

HCFANY also educated regulators about problems that consumers have with Marketplace dental plans. The New York State Department of Health and the Department of Financial Services imposed new requirements on Marketplace dental plans, including a tool that allows consumers to compare dental plans, explains waiting periods and benefit maximums, and clarifies what services are subject to the plan’s deductible.

HCFANY used traditional and social media and other communications tools to gain attention and build support. Coalition members presented to a wide variety of community groups. For example, Make the Road New York educated immigrant community members on transparency issues; New Yorkers for Accessible Health Coverage trained voluntary health association staff and community-based health providers on medical debt reform proposals; Community Catalyst and Young Invincibles hosted a webinar on how young people are uniquely impacted by medical debt; and Medicare Rights Center presented its medical billing simplification paper at a coalition meeting on Medicare savings. COVID-19 has since made it more difficult to conduct public outreach using traditional methods, so HCFANY has focused on getting out the word through social media and webinars for advocates.

To help build momentum for the campaign, NYHealth awarded HCFANY a second grant in March 2020 to continue to engage in its advocacy agenda to amplify the consumer voice and engage patients as partners in decision-making.

Co-Funding and Additional Funds Leveraged: N/A