Using Partnerships and Participatory Research to Develop and Evaluate a Guidebook for Seniors and People with Disabilities On Medicaid

Background: Communicating effectively with vulnerable populations is a critical public health challenge. Of Medicaid beneficiaries, the most at-risk subgroups are seniors and people with disabilities. Their communication barriers are even greater than others and many have limited health literacy skills, limited English proficiency or physical/cognitive conditions that impede information access. Design principles for clear communication are invaluable, but can only approximate how real audiences use and react to communication. For this reason, increasing emphasis is being placed on participatory design—a structured approach that employs varied formative research methods to involve intended consumer and professional audiences as co-developers and partners in creating communication materials. This presentation provides a detailed description of the methodology involved in creating partnerships and developing, implementing, and evaluating user-centered, materials-based mass communication, specifically developed for those with limited health literacy skills.

Program background: Researchers at UC Berkeley partnered with the California Department of Health Care Services, Medi-Cal Managed Care Department, to conduct multi-phased participatory research to develop a guidebook for seniors and people with disabilities on Medi-Cal (California’s Medicaid program) to help them better understand their health care options. The guidebook was initially developed in three languages. Input on the content and format of the guidebook was collected from beneficiaries, professionals, and partners through five different formative evaluation methodologies, including in-depth interviews, focus groups, key informant telephone interviews, and an advisory group. Participatory methods during the development phase were extensive as our goal was to develop effective communication for a population of seniors and persons with disabilities who have high levels of limited health literacy and limited English proficiency.

Evaluation Methods and Results: The guidebook was evaluated through qualitative key informant interviews and focus groups with Medi-Cal beneficiaries. It was also evaluated through a randomized controlled trial with a representative sample of 692 participants (319 intervention and 373 control) who were English-, Spanish-, or Chinese-speaking seniors or people with disabilities on Medi-Cal; our strong partnership with the California Department of Health Care Services allowed us necessary access to beneficiary data. Participants were interviewed twice; the first interview was to collect baseline information and the second interview, conducted four to six weeks later, was to determine if beneficiaries had changes in knowledge, attitudes, or behaviors regarding Medi-Cal Managed Care. Findings include information that particpants’ baseline knowledge about Medi-Cal choices was very low, that approximately two-thirds of those who used the guidebook reported learning something new, and that overall, participants who received the guidebook significantly improved their knowledge, confidence, and empowerment about Medi-Cal choices and benefits compared to the control group.

Conclusions: Findings from this project demonstrate that an intervention created using partnerships, participatory design, and rigorous health literacy methodology can produce an effective and low-cost way to reach and impact various populations. Partnering with a state agency was crucial for developing accurate content, working directly with Medi-Cal beneficiaries to conduct participatory research, and disseminating the intervention efficiently.

Implications for research and/or practice: Additional research is currently being conducted with this study population to learn further details about the impact of this intervention.