In July and August 2019, CPEHN worked with six partner organizations, including Disability Rights Education and Defense Fund, Black Women for Wellness, Latino Coalition for a Healthy California, Asian Americans Advancing Justice-Los Angeles, Consortium for Urban Indian Health, and Diversity Collective of Ventura County to host six focus groups across the state to gather data for the Health Equity System Transformation (HEST) project. These focus groups sought to engage consumers with diverse identities and backgrounds, including race/ethnicity, sexual orientation and gender identity, primary language, disability status, age, and marital status. Discussions were around key areas including accessibility and quality of care, health care costs, doctor-patient engagement, and cultural sensitivity. As a result, we heard many voices and stories reflecting a diversity of health care experiences. We were also able to identify the following common themes shared among many focus group participants.
Barriers Accessing Care
Many reported challenges accessing health care, even when they had health coverage or insurance.
- Wait times for appointments and at visits were long. Participants reported that it could take weeks before getting an appointment, and sometimes hours on the day of the visit to be seen by a doctor.
- Language access was inadequate. Many reported they had never been informed of their right to an interpreter. Those who received interpretation complained about its poor quality.
- Transportation posed barriers. Especially in the Central Valley and rural areas where provider density is low, transportation remains difficult for many.
- Health care remained costly. Despite having health insurance, participants shared that high out-of-pocket costs posed barriers to getting care, especially dental services.
Difficulty Navigating the Health Care System
Complexities of our health care system could be baffling.
- Provider directories were inaccurate and outdated. Participants shared that often a provider found in a company’s directory may not accept their insurance, especially for mental health providers.
- Important plan documents were difficult to read. Member handbooks and billing documents contain important information on benefits and costs, yet many complained they struggled to understand these documents. Translated or in-language documents can be even less comprehensible.
- Getting help from a health plan was challenging. Those who tried calling a health plan support line expressed frustration and reported that they rarely got the help or answers they needed.
- Shifting eligibility could lead to unpredictable lapses in coverage. For means-tested programs like Medi-Cal, individuals whose income changes led to abruptly terminated coverage could not keep seeing their doctor.
Stigmatizing or Disrespectful Treatment
Participants shared stories of discrimination and mistreatment by providers, often in ways that made them reluctant to seek further care.
- Many participants shared stories of inappropriate provider behavior due to a perceived aspect of their identity, including but not limited to their language, race, sexual orientation, gender identity, disability status, size, or weight. In addition to getting unwelcome comments and assumptions about an individual’s lifestyle, some participants complained that their providers would ignore their stated health care needs and impose personal biases. (For example, commenting on a patient’s weight during a visit for an unrelated condition, or making lifestyle judgments due to racial stereotyping.) Many of these experiences were highly intersectional.
Poor Patient Engagement
Doctors were found to not have properly or adequately engaged with or cared for their patients.
- Time with doctors was excessively limited. Patients did not like the brief amount of time they received with a doctor, and could feel equally unsatisfied when such time became substituted for that with nurses, physicians assistants, and other care team members.
- Patients felt unprepared to make decisions about their care, and to perform necessary follow-up. Many shared frustration that they did not receive adequate explanations or information on the medical procedures they were undergoing, or home care instructions following a procedure. They often felt rushed to signing paperwork to authorize treatment without fully understanding their care options.
- Patients preferred bilingual doctors, but many were unable to find one. Generally, participants were more satisfied with their care when they could speak directly with their doctor without an interpreter, in part because the qualify of medical interpretation often fell short.
Lastly, CPEHN also found that many consumers were interested in participating in a decision-making body charged with making recommendations to improve health care systems, for instance, a patient engagement committee. However, many expressed the need to make such engagement accessible and to compensate for their time.
CPEHN has since hosted two regional convenings with local community stakeholders in the Central Valley and in Southern California to share these findings, and to gather feedback and ideas about potential policy solutions that could be built into ongoing state policy processes, such as the Medicaid Section 1115 waiver renewal. CPEHN plans to host two more regional convenings in early 2020. Lastly, these findings will help construct CPEHN’s policy roadmap for the next years in order to ensure that health reform activities remain centered in community health equity needs.
[Picture 1: participants at the Fresno HEST Convening, September 26, 2019]
[Picture 2: participants at the Orange County HEST Convening, September 17, 2019]
*This project is funded by the California Health Care Foundation