By Lisa Watts
Researchers worked with older adults of color in California to begin co-creating quality measures for home and community-based services.
A pilot project focusing on quality measures for Medicaid’s home and community-based services (HCBS) program taught researchers as much about the process of “co-creation” as it did about HCBS quality.
Co-creation is a research method that purposely involves the people receiving care in studies about that care.
The researchers, including two fellows from the LeadingAge LTSS Center @UMass Boston, used co-creation methods to learn what matters most to older adults of color who receive or have received HCBS and are eligible for both Medicaid and Medicare. The work was designed to address concerns that the voices and priorities of care recipients are not often reflected or validated in measurements of HCBS quality.
“This project highlighted the importance of engaging people with lived experience to make a co-creation process meaningful,” says Marc Cohen, LTSS Center co-director and a member of the research team. Other researchers included LTSS Center fellow Eileen J. Tell and Michael Brand of the Center for Community Engagement in Health Innovation at Community Catalyst. Their work was supported by grants from the California Health Care Foundation and the SCAN Foundation.
Study findings are featured in Centering Perspectives of Dually Eligible Older Adults of Color: Piloting Co-Creation of Home and Community-Based Care Quality Measures.
FOCUS ON CALIFORNIA
The research project focused on HCBS recipients in California, where 1.7 million people are dually eligible for Medicare and Medi-Cal, the state’s Medicaid program. Two-thirds of these beneficiaries belong to communities of color.
National analyses suggest that people of color are under-represented in surveys measuring patient experience. Through the California Advancing and Innovating Medi-Cal initiative, the state’s health and social care systems are working to improve their understanding of what is most important to people receiving care.
During the study, Community Catalyst and the LTSS Center partnered with three nonprofit organizations working directly with people who receive HCBS in California: The Cambodian Family, a community-based organization helping refugees and immigrants in Santa Ana; Curry Senior Center in San Francisco; and the multi-county Alliance for Leadership and Education, which works to enhance the quality of adult day services.
Researchers set out to:
- Develop an inventory of survey questions that could be a starting point for measuring HCBS quality.
- Convene a community advisory committee to inform the research approach and interpret findings.
- Conduct focus groups and interviews with HCBS recipients and their caregivers.
STUDY FINDINGS
The study’s results were straightforward, according to the project’s final report.
“Access to services (and measures related to access) was the single most important issue for participants,” the researchers wrote. “All other quality-related issues were viewed as secondary. … The implication is that quality metrics focusing on HCBS should begin with and always include access-related measures.”
Cohen says the insights researchers gained about co-creation were as enlightening as the study’s findings.
“It was really interesting to work with people with lived experiences to inform our process,” he says. “Co-creation is challenging. Among the lessons we learned are to stop over-communicating; they told us we were sending too many emails and that we needed to be more concise in our communications. Don’t use words that don’t resonate with us, like ‘dimensions of quality.’ And we learned the importance of trust because we were trying to be partners, not push an agenda or persuade these important stakeholders in any way.”
Researcher Eileen Tell underscored the importance of consumer input.
“Even though we had an inventory of nearly 150 questions from national and California-based surveys to work with, the consumers raised quality concerns that were not represented in any prior work,” she says. “Specifically, they said it was important to them that caregivers be empathetic and caring.”
Cohen is proud of the final report, which he says “is precise, reads easily,” and offers California officials a preliminary set of quality questions that care recipients have vetted. This preliminary pilot study is a first step in developing a more comprehensive set of measures for future use both in and outside of California, he says.