How Do Low-Income Californians Experience Health Care?
Major “listening” project aims to close gaps in research
Over the years, CHCF has made a point of supporting research that enables leaders in California’s health care safety net to better understand the perspectives of the people they serve. The foundation has conducted various health care “listening” projects that focus on Californians with low incomes. These projects include Listening to Mothers in California and the California Health Policy Survey, and later this year CHCF will update its Final Chapter survey about Californians’ attitudes toward end-of-life care.
Now CHCF is launching a major research project to help California understand and document how people with low incomes experience their health care. Senior program officer Carlina Hansen is spearheading the project, which will last 18 months. I recently sat down with Carlina to learn more about the project.
Q. There are other surveys that address the health care experiences of Californians. How is your project different?
A. We designed it to build on existing research, not to replicate it. In California, we are lucky to have rich data from the California Health Interview Survey (CHIS) and Consumer Assessment of Healthcare Providers and Systems. Among other health care studies, there is also the recent CHCF/Kaiser Family Foundation statewide poll.
As valuable as those resources are, they do not paint a clear, comprehensive, and current picture of how Californians experience their care in the safety-net delivery system. For example, CHIS can tell you how many Californians had difficulty accessing care in the last six months, but it can’t tell you if it was because the local clinic wasn’t open when they needed an appointment, or that they couldn’t find a provider who spoke their primary language, or that they didn’t feel respected in the setting where they received care. Those are the kinds of details that we are trying to fill in with this project.
Q. Who is the audience for this research, and how do you hope they will use it?
A. Policies and programs work better when they are informed by the people they serve. We hope this project will give people making decisions in the health care safety net better insight into the needs and experiences of their clients. That includes people working in health plans, hospitals, the California Department of Health Care Services, consumer advocacy groups, and providers. We’ve designed this research to be as robust as possible so they can lean on the data with confidence.
Here at CHCF, we are excited to see how this project will inform our own work, especially the work we do to improve the delivery of care in the safety net and strengthen accountability in Medi-Cal. Listening projects like this are not new for us, but now we’re making a more concerted effort to ensure that all of our programs are grounded in the real-world experiences and concerns of Californians, especially those who struggle financially.
Q. What topics will you explore with the survey participants?
A. We want to understand the wants, needs, and experiences of Californians in the safety-net primary care delivery system. We’re focusing the research on people with incomes under 200% of the federal poverty level. We’ll explore issues related to the types of services available, hours, transportation, coordination within the health team and with specialty providers, language access, promptness of follow up, and communication of test results. We’ll also learn about whether they feel respected, understood, and cared for, about the availability of phone, video, and group care, and about their providers’ use of patient portals, text messaging, and apps.
Q. This sounds like an ambitious project. Who’s doing the research?
A. We are excited to be working with NORC at the University of Chicago, which has extensive experience researching health care for people with low incomes in California and across the country. NORC is one of Covered California’s lead research partners, and it has been conducting annual surveys of both uninsured and insured Californians. That includes Covered California members, Medi-Cal enrollees, Californians insured through individual health plans purchased off-exchange, and uninsured people at all income levels. That kind of research background is a real asset. In addition, Andy Bindman, a UCSF professor of medicine and health policy expert, will be advising on the project. He brings a wealth of knowledge as a researcher, a primary care physician, and policymaker. He will help ensure that we don’t reinvent the wheel and that we glean the most useful findings.
Q. Surveys are getting harder to do, and you’re focusing on a population that is one of the hardest to reach. How will that affect NORC’s approach?
A. Survey-based researchers used to rely heavily on random-digit telephone dialing to reach respondents, but with people answering their phone less than they used to, that has become more time consuming and expensive. So, we worked closely with NORC to combine those traditional approaches with a newer methodology called redirected inbound call sampling. We felt that this hybrid approach would ensure that the survey sample reflects a broad diversity of Californians with low incomes. Our sample must represent urban and rural perspectives, be racially and ethnically diverse, and include people who speak Spanish, Cantonese, or Vietnamese, in addition to people who speak English. And of course, it must focus on people who have recent experience with the safety-net delivery system. That’s a tall order, but it’s really the only way to ensure that the results are relevant, representative, and meaningful.
Q. Will you be doing other kinds of “listening” in addition to a telephone survey?
A. To really understand the lived health care experiences of people with low incomes, we believe you need to use both qualitative and quantitative research methods. This project gives us the best of both worlds. We’ll start by doing 12 focus groups in communities around the state in Modesto, Oakland, Los Angeles, and Shasta. Some of those groups will focus on subpopulations like Spanish or Cantonese speakers or members of the Black community. We will also do in-depth interviews with Vietnamese speakers. These focus groups and interviews will help us check our assumptions and pick up themes that we might otherwise miss. What we hear in the focus groups will help us set priorities in the second phase, which is the phone survey.
We will then follow up with in-depth individual interviews so we can dive even deeper into the key topics or themes that that have surfaced. Those personal stories can help connect the dots among different findings and give us a “whole person” perspective on the data. We will also try to capture some of those stories in audio or video to share in the final research package. All told, this will take 18 months to complete. I’m excited to fill in the gaps in our knowledge about these issues and share them with Californians.
A. Will you be sharing your findings before then?
A. While the research is underway, we will post occasional updates on The CHCF Blog about what we’re learning. In the meantime, readers can check out our complete collection of projects in our listening series.