The first CHIS (CHIS 2001) was the product of a 3-year planning project that included a technical assessment component and several outreach activities that are consistent with the limited level of constituency participation found in many public health needs assessments (
The CHIS sample design reflects the developers' responses to participant suggestions. Many public health and advocacy respondents expressed a need for data on California's ethnically diverse population, with a specific focus on smaller ethnic and racial groups (such as Asian ethnic groups and American Indians/Alaska Natives) that are seldom adequately represented in national or state population-based health surveys. At the same time, given the size of California's population and the physical size of the state itself, local health departments and state and community advocacy groups emphasized their need for local population data capable of reflecting estimates for small geographic areas. In response to both of these requests, the CHIS sample was designed to yield estimates for most counties in California and for the state's major ethnic and racial groups, as well as for numerous smaller racial and ethnic populations. The sample design evolved into a multistage random-digit–dial telephone survey with 41 geographically defined sampling strata, a large sample, and oversamples of several ethnic populations.
Feedback on the content also influenced the final design. Respondents suggested including many health topics that are not usually addressed in other California population-based surveys or for which statewide data but no local data exist; such topics include gun violence, sexual orientation, and access to health care. This feedback confirmed preliminary plans for developing an omnibus public health survey that covered a broad range of health topics, with an ongoing core set of topics and other special topics that rotated in and out of the survey over successive cycles.
Respondent feedback also influenced how often the survey would be conducted. Potential data users reported that it would be sufficient to collect data about key indicators every 2 years rather than every year. Therefore, the survey was designed as a biennial survey, with more resources being used to recruit the large sample size needed to achieve the estimation goals rather than being used for annual data collection, which would have been far more expensive than a biennial survey.
Thus, the planning project followed a widely used needs assessment model. Community participants focused on providing input that was structured, analyzed, and used by the project staff. Although respondents who provided input during the planning process were not involved in decision making, their feedback influenced the survey's content, sample design, and sample size; the populations and geographic areas sampled; and the frequency of data collection.
At the conclusion of the planning project, a new and more extensive ongoing participatory structure and process were created to develop policy and content for the new survey, a participatory model shown in the Figure. The three planning organizations established a formal collaboration, with the Center as the lead organization and DHS and PHI serving as partners. The organizations also agreed to develop a structure that involved advocacy groups, state and community health care organizations, and public agencies in planning all aspects of each CHIS cycle.
The California Health Interview Survey participatory model.
The collaborating organizations established a governing board — the ultimate decision-making body — in which the lead CHIS person from each organization was represented. The CHIS principal investigator leads the
The governing board created the CHIS advisory board (Figure) to provide ongoing policy guidance for all phases of the survey. The advisory board has more than 25 members, and its first chairperson was the director of DHS. Its current chairperson is the governor of California's cabinet-level secretary for health and human services. The advisory board members include directors of three state health agencies and chief executive officers or presidents of statewide associations of local health departments, community clinics, rural health care providers, hospitals, and health plans; public health officers from two large California counties; members of the research arm of the legislature; members of 12 advocacy organizations representing populations of color, low-income populations, children, and people with disabilities; members of a foundation; and representatives from the University of California health division.
The advisory board meets quarterly and recommends issues to address, topics to include in the survey, sampling goals, dissemination goals, and funding strategies. Although the advisory board can only recommend policy to the governing board, if the governing board chooses not implement a particular recommendation, it explains the reason to the advisory board. Although such a relationship could lead to tension over the authority and role of the advisory board, the responsiveness of the CHIS team to the advisory board has prevented any such conflict.
Formal technical advisory committees (TACs) were created to advise the CHIS team on specific content and measurement issues (Figure). Individual TACs are responsible for providing advice on the adult, adolescent, and child questionnaires; sample design and survey methodology; and multicultural issues. For each CHIS cycle, the multicultural issues TAC provides advice on which specific ethnic groups need formal language translations, which groups need culturally specific interview adaptations, and measurement issues related to ethnicity, acculturation, and discrimination. Additional working groups are formed as needed to focus on more specific content, measurement, and population issues, including groups on women's health, diet and nutrition, physical activity, disability, and aging.
The questionnaire topics for the survey are proposed and discussed at each relevant TAC meeting. Before the meetings, the CHIS team distributes a list of topics that were included in previous surveys and a list of topics that had been recommended and discussed but not included. Each TAC member can suggest new topics, recommend including or not including previously used topics, suggest new or different question formats, and discuss all topics and specific questions being considered. By the conclusion of the meeting, the TAC has discussed all survey topics and ranked them in order of importance according to how well they support policy advocacy and development or research needs for the relevant population. Based on the rankings of the TAC, the topics are then developed by the CHIS team for inclusion in the survey, but the amount of interview time available ultimately affects the number of topics included. TAC members are encouraged to access a Web site to review and comment on in-progress drafts.
Although the TACs handle technical issues, their members have a broad range of expertise and include staff members of advocacy, public health, and health care delivery organizations, as well as researchers affiliated with major universities and research organizations. The TACs meet once or twice during the planning process. The CHIS encourages in-person participation by paying the transportation costs of those who must travel to attend the meetings. Like the advisory board, TACs serve as advisors to the CHIS team. Few barriers to recruiting and retaining TAC members have emerged, largely because the members know they have an impact on the survey. Their input is reflected in the survey questionnaires, sample design, and other elements of each survey.
During the development of the CHIS 2001, more than 100 individuals from 54 separate scientific, professional, advocacy, and community-based organizations participated in the advisory board and five TACs, and another 20 people participated in the more narrowly focused work groups. For the CHIS 2003, more than 145 individuals from more than 60 organizations participated.
Major funders for the survey play a key role in its development (
The CHIS's dependence on multiple funders clearly affects the survey team's interactions with the CHIS advisory board and the TACs. The need for multiple funders could result in substantial, potentially conflicting, influences. However, because DHS is a CHIS partner and its core funder, its commitment to supporting the participatory process and involving its own program and research staff members in that process provides latitude for the CHIS team to be responsive to other funders and the broader constituency. The CHIS team also seeks funding to support the topic areas and population groups identified as priorities by the CHIS advisory board and the TACs. In addition, all funders are required to contribute to overall content and sample objectives.
Despite the potential for conflict between the advisory component of CHIS (the advisory board and TACs) and the CHIS team and funders, their goals have been remarkably similar. For example, advocates and researchers on the advisory board and the multicultural issues TAC strongly recommended oversampling Asian ethnic groups and American Indians/Alaska Natives — recommendations that were unanimously supported by the advisory board and TACs. Two major funders were enthusiastic about supporting these decisions: a federal agency with research interest in the populations and a foundation that was urged by advocates to support data collection on Asian ethnic groups. The CHIS team also secured additional funding from the U.S. Indian Health Service for oversampling of American Indians/Alaska Natives.
The importance of being represented during and participating in the survey's development is illustrated by the choice of groups that were oversampled. Asian ethnic groups and American Indians/Alaska Natives are the only groups that have been oversampled. Latino and African American advisory group members did not advocate oversampling of the populations because sufficient sample sizes were expected to be generated. No advisors suggested oversampling predominantly white ethnic subgroups such as Armenians or Russians, even though a significant percentage of their populations are immigrants and are likely to have significant health issues. The issue was discussed at the multicultural issues TAC meetings. However, because no advocacy groups from these populations were represented in any of the advisory groups, members of other populations argued for other oversampling priorities. Thus, those who were more involved were able to understand the survey's resource limitations and were satisfied with the anticipated outcomes, whereas the population groups that were not well-represented had no real opportunity to express their views, a common limitation in community-based participatory research (
Explicit, formula-based criteria were used to develop various facets of the survey. For example, the CHIS team worked with the multicultural issues TAC to develop quantitative criteria for selecting the non-English languages into which the survey would be translated. Languages for translation were selected based on the number of people from the language-related ethnic group that was predicted to be in the CHIS sample and the percentage of the group that was "linguistically isolated" (i.e., that lived in a household in which no member older than age 14 years could speak English well) (
The sample and questionnaires for each survey cycle are developed by the CHIS team but guided by recommendations of several key advisory bodies that represent a broad range of user constituencies from state and local governments, public health organizations, health care providers, and advocacy groups. Ensuring that all relevant participants know how decisions are being made combined with explaining resource constraints and variations from advisory body recommendations result in an atmosphere of trust between the CHIS team and the advisory groups.