Empowering Health Care Consumers

Grantee Name

Medicaid Matters New York

Funding Area

Empowering Health Care Consumers

Publication Date

January 2019

Grant Amount


Grant Date:

July 2017 – May 2018

One-quarter of New York State’s population, more than 6.2 million people, relies on Medicaid for health insurance coverage.

Most of these individuals are enrolled in Medicaid managed care organizations (MCOs), which contract with the State to assume responsibility for Medicaid enrollees’ health care. For people enrolled in Medicaid with fewer resources, accessing information to maintain their health can be challenging. Among health care consumers, the divide between lower-income and higher-income people may be further exacerbated by the rise of information tools and resources that cater primarily to those who are commercially insured, financially secure, or already activated patients. Transparency initiatives are of great value for enabling more informed, resourced, and activated patients, but they may leave behind the millions of New Yorkers who rely on Medicaid. Transparency tools on quality variation among providers, for example, could be of value to this population, but it is unclear whether enrollees have access to or are aware of these resources.

NYHealth awarded Medicaid Matters New York (MMNY), through fiscal sponsor Schuyler Center for Analysis and Advocacy, a grant to understand the informational needs of Medicaid enrollees.

Outcomes and Lessons Learned

  • Gathered baseline data on the information and transparency needs of Medicaid managed care enrollees; the challenges enrollees face when trying to secure the tools and information needed; and if or how MCOs are taking steps to meet those needs.
  • Conducted a focus group with MCOs to gather their understanding of the information needs of Medicaid managed care enrollees and how they currently provide information to them.
  • Conducted seven focus groups with Medicaid managed care enrollees from diverse ethnic/racial backgrounds in geographically diverse areas (Albany, Buffalo, Syracuse, and Queens) on the following questions:
    • Have you ever been unable to get the care you think you need?
    • What do you do if you don’t like your doctor? Do you know you are allowed to switch primary care providers/MCOs at any time? Do you know how to?
    • Do you understand your rights as a Medicaid managed care enrollee? Do you know you are allowed to file a complaint? Do you know how to?
    • What do you do if you think your plan or doctor is not allowing you to get the care you need?
    • Do you receive information about health service quality from MCOs? What is your perception of quality, and do you use quality to compare across providers?
  • Summarized key findings from the enrollee focus groups in a final report:
    • Medicaid enrollees reported receiving information from MCOs about their rights, what to do if they are dissatisfied with their services, how to file a complaint, and how to switch a health provider. However, this information was typically provided by mail and was complicated to understand, which presented challenges for enrollees with limited reading ability. Enrollees preferred receiving information from customer service representatives during phone calls.
    • Enrollees identified provider communication as an important dimension of quality, along with timely and equitable treatment, regardless of insurance status.

Results from the focus groups provided information on people’s understanding of their rights as Medicaid enrollees and how to file a complaint; their experience accessing doctors and challenges faced when navigating the care delivery system (e.g., long wait times, substandard care, unequal treatment); knowledge of recourse to take if they are not receiving the care they think they need; and perceptions of quality and familiarity with sources to get information on the quality of their providers.

Although the project collected some useful baseline data, there were still information gaps regarding the information needs of Medicaid managed care enrollees. Additionally, the focus group with MCOs was conducted before the enrollee focus groups, thus missing an opportunity to share and discuss learnings from the enrollees with MCOs. In hindsight, the order of those activities by the grantee should have been reversed. Finally, limited information was collected from MCOs on their understanding of the information needs of their enrollees and the steps they were taking to meet those needs. Consequently, the final report did not contain sufficient information on learnings from MCOs or provide recommendations for how MCOs could meet enrollees’ information needs.

As a result, a key objective to develop recommendations for how MCOs could better address the information needs of enrollees was not met. Although MMNY engaged the support of MCOs early on, there was not consistent participation throughout the project. Having some type of formal partnership with an MCO from the onset of the project might have mitigated this issue. As the only statewide coalition dedicated to advancing the interests of Medicaid beneficiaries, MMNY is focused on ensuring the viability of Medicaid and addressing pressing access issues being faced by beneficiaries. Given MMNY’s mission, the goal of this project to address the information needs of MCO enrollees may not have aligned with the top priority interests of the grantee.

 Co-Funding and Additional Funds Leveraged: N/A