Leveraging CHESS Data for Research, Policy, and Advocacy

By Laura McGovern, MPA

Many health care survey initiatives encounter challenges, two of those are: (1) a lack of focus on state-level estimates, and (2) insufficient examination of the full range of health care affordability burdens affecting consumers and the system-wide factors contributing to these difficulties. Altarum’s Consumer Healthcare Experience State Surveys (CHESS) seek to remedy these shortcomings.

Administered in both English and Spanish via a web panel comprising approximately 1,500 respondents per state, CHESS is structured to gather insights on an array of health care topics and to quantify state-specific issues relating to affordability, medical debt, health literacy, coverage, trust in the health care system, and prescription drug costs. In addition to collecting data on perceived barriers to affordability, anxieties about health care expenses, and the prevalence of medical debt, CHESS solicits respondents’ perspectives on diverse policy solutions and their views regarding the health and social support systems. These insights are captured through both quantitative and qualitative means.

Since its inception in 2018, the CHESS has been implemented in 38 states and the District of Columbia, with certain states surveyed multiple times. Altarum works collaboratively with partners in each participating state to identify areas of most interest to them, while maintaining a core baseline survey that is comparable across participating states, and avoiding “survey fatigue” among respondents. Survey findings are disseminated as data briefs and infographics focused on health care affordability, high prescription drug costs, unexpected medical bills, the impact of medical debt, hospital costs, and trust and respect in the medical system.

The Importance of the Consumer Experience in Driving Health Care Policy and Program Development

Consumer experience measures are central to delivering patient-centered care and achieving measurable system improvements. While more research is needed to fully understand the role of consumer experiences in health care policy, there is evidence to suggest that policymakers value information that is relevant to their constituents and presented in a brief, concise, and understandable way.^1,2 Framing research through stories that relate to constituents’ experiences increases its perceived usefulness and influence among legislators, especially those who prioritize health issues such as cancer or behavioral health.^3,4,5 Combining narratives with data, infographics, and policy briefs, and delivering them through trusted messengers increases the likelihood of influencing policy.⁶

Combining quantitative consumer experience data with qualitative narratives enables a fuller understanding of system performance and human impact. CHESS, having both quantitative and qualitative data elements, is well suited to illuminate the challenges facing consumers in a specific state and highlight their thoughts on how to solve them. State governments, researchers, and advocates are using CHESS findings to build legislative cases (e.g., medical debt protections, affordability measures), guide state agency strategies and program design, and drive public communications that mobilize coalitions and interested parties. In this brief, we explore three use cases from academic research, state policy making, and advocacy.

Using CHESS in Research – Connecting Rurality to Health Care Access and Disparities

Given the ongoing need for research on health care access challenges and the significance of establishing coherent policy frameworks across varying degrees of rurality, researchers at Cornell Jeb E. Brooks School of Public Policy are working to identify both the widespread prevalence of these challenges and specific health care access issues. While certain challenges may disproportionately affect rural areas, many remain consistently significant throughout the rural-urban continuum and could serve as important catalysts for advancing fairness through policy initiatives.

Unlike studies that compare rural and urban areas with broad categories, Cornell researchers are employing the Index of Relative Rurality (IRR), which is a continuous measure developed by Waldorf and Kim, to more precisely assess rurality. The IRR, which accounts for size, density, remoteness, and built-up area, addresses mismatches between policy definitions and rural realities and enables nuanced analysis beyond the National Health Interview Survey’s six-category stratification. This method highlights small differences in rurality, distinguishes among urban, suburban, and rural regions, and identifies “transition counties” with resource access that might otherwise be overlooked.

Across various years and states, CHESS has identified 11 specific barriers to accessing health care. The Cornell team is combining this data with IRR data. Using the Health Care Access Barriers model, the data is then organized into three categories: financial, structural, and cognitive barriers. Each category relates to disparities in health outcomes (see Figure 1). The team is also conducting the following two main analyses on the data: 

• “Rurality (IRR), Race, and Access to Healthcare.” The study compares how rurality affects health care access challenges, using regression analysis between IRR and the rate of reported barriers.
  
• “Barriers Across Rurality.” The second component of the study examines barrier prevalence by rurality, focusing on: 1. Barriers common everywhere that especially affect rural areas; 2. Barriers present along the entire rural-urban spectrum; 3. Barriers unique to rural areas versus urban ones.

Using CHESS in Health Care Policy and Benchmarking in Connecticut

Since 2018, interested parties in Connecticut have actively leveraged CHESS data to address rising health care costs within the state. CHESS findings have been integrated into legislative testimony, informed policy recommendations, and contributed to statewide benchmarking initiatives.

In March 2020, Connecticut established its Healthcare Benchmarks through Executive Order No. 5, which was subsequently codified in Public Act 22-118. At the core of these benchmarks is the cost growth benchmark; Connecticut’s targeted annual per-person growth rate for total health care spending. The central objective is to curb the escalation of health care costs and enhance affordability for state residents. However, while benchmark data provides valuable metrics, it reveals only part of the overall story.

CHESS data complements benchmark figures by illuminating the underlying reasons for interested parties to take action. It offers insights into the human experience behind the numbers, translating complex trends and per-member-per-month analyses into relatable information for interested parties, including legislators. This transformation, from raw data to empathetic understanding, enables policymakers to appreciate not only what is happening, but why it matters to people in Connecticut.

Furthermore, CHESS plays a vital role in fostering collaboration among nonprofit organizations and other interested parties by highlighting key issues such as medical debt, access, and fairness. Its ability to present the experiences of different income groups has proven especially valuable in advocacy and policy design.

To date, four CHESS surveys have been conducted in Connecticut, with the most recent survey released in September 2025. The availability of CHESS data has allowed interested parties to demonstrate the real-world effects of policy changes and affordability challenges, ultimately supporting efforts to ensure accessible and affordable health care for all Connecticut residents.

Using CHESS in Advocacy and Engagement: Washington’s Northwest Health Law Advocates (NoHLA)

Washington stakeholders have leveraged CHESS data to support proposed legislation, contribute to reports on the impact of high health care costs, and develop recommendations aimed at improving health care access and increasing the availability of culturally appropriate care. Notably, Northwest Health Law Advocates (NoHLA), which works to expand access to care, protect the rights of patients, and promote fairness across the health care system, has played a pivotal role in these initiatives by using CHESS data in several ways:

• NoHLA has utilized CHESS data in legislative testimony to support various bills, such as “HB 1508: Improving Consumer Affordability through the Health Care Cost Transparency Board,” as well as legislation targeting facility fees.
  
• In 2022, NoHLA, alongside twenty other interested organizations, referenced the CHESS survey in a letter to the governor. This letter called for enhancements to the state’s Prescription Drug Affordability Board, further illustrating the importance of consumer experience data in policymaking.
  
• NoHLA applied CHESS findings in coalition work that helped secure state-level medical debt protections, including the removal of medical debt from credit reports in Washington—a clear policy achievement driven by consumer experience evidence.

The August 2022 CHESS survey provided critical insights, revealing that 62% of adults in Washington experienced health care affordability burdens and 81% were concerned about future costs. The data also highlighted significant disparities in access and trust based on demographic data, including income and disability status. These findings were formally incorporated into the agendas and meeting materials of Washington’s Health Care Cost Transparency Board, adding consumer voice to policy discussions surrounding pricing benchmarks, facility fees, and provider rate setting.

Conclusion

The CHESS demonstrates the critical value of state-specific, consumer-driven data in illuminating health care affordability challenges and informing actionable policy and program development. By integrating both quantitative and qualitative insights, CHESS offers a robust, nuanced understanding of the system-wide barriers faced by diverse populations across the states surveyed. Its application in academic research, policymaking, and advocacy underscores its versatility and impact, empowering stakeholders to design targeted interventions and advance fair health care solutions. As more states leverage these findings, the consumer voice will remain central to shaping a health care system that better meets the needs of all communities.

References

1. Chapman, E., Pantoja, T., Kuchenmüller, T., Sharma, T., & Terry, R. F. (2021). Assessing the impact of knowledge communication and dissemination strategies targeted at health policy-makers and managers: an overview of systematic reviews. Health Research Policy and Systems, 19, 140. https://doi.org/10.1186/s12961-021-00780-4

2. Moreland-Russell, S., Barbero, C., Andersen, S., Geary, N., Dodson, E. A., & Brownson, R. C. (2015). “Hearing from all sides” How legislative testimony influences state level policy-makers in the United States. International Journal of Health Policy and Management, 4(2), 91–98. https://doi.org/10.15171/ijhpm.2015.13

3. Brownson, R. C., Dodson, E. A., Kerner, J. F., & Moreland-Russell, S. (2016). Framing research for state policymakers who place a priority on cancer. Cancer Causes & Control, 27(8), 1035–1041. https://doi.org/10.1007/s10552-016-0771-0

4. Smith, N. R., Mazzucca, S., Ha, M. G., Lich, K. H., Brownson, R. C., & Frerichs, L. (2022). Opportunities to improve policy dissemination by tailoring communication materials to the research priorities of legislators. Implementation Science Communications, 3, 24. https://doi.org/10.1186/s43058-022-00274-6

5. Purtle, J., Dodson, E. A., & Brownson, R. C. (2016). Use of research evidence among US state legislators who prioritize behavioral health issues. Psychiatric Services, 67(12), 1355–1361. https://doi.org/10.1176/appi.ps.201500443

6. Chapman, E., Pantoja, T., Kuchenmüller, T., Sharma, T., & Terry, R. F. (2021). Assessing the impact of knowledge communication and dissemination strategies targeted at health policy-makers and managers: an overview of systematic reviews. Health Research Policy and Systems, 19, 140. https://doi.org/10.1186/s12961-021-00780-4