摘要：Objectives. We used participatory design methods to develop and test guidebooks about health care choices intended for 600 000 English-, Spanish-, and Chinese-speaking seniors and people with disabilities receiving Medicaid in California. Methods. Design and testing processes were conducted with consumers and professionals; they included 24 advisory group interviews, 36 usability tests, 18 focus groups (105 participants), 51 key informant interviews, guidebook readability and suitability testing, linguistic adaptation, and iterative revisions of 4 prototypes. Results. Participatory design processes identified preferences of intended audiences for guidebook content, linguistic adaptation, and format; guidebook readability was scored at the sixth- to eighth-grade level and suitability at 95%. These findings informed the design of a separate efficacy study that showed high guidebook usage and satisfaction, and better gains in knowledge, confidence, and intended behaviors among intervention participants than among control participants. Conclusions. Participatory design can be used effectively in mass communication to inform vulnerable audiences of health care choices. The techniques described can be adapted for a broad range of health communication interventions. Reaching vulnerable populations and communicating effectively with them is a critical public health challenge. The estimated 55.6 million Medicaid beneficiaries 1 are one of the most vulnerable US populations and face serious communication barriers related to limited literacy, language, culture, and disability. 2 , 3 Of this population, the most at-risk subgroups are the more than 13.5 million seniors and people with disabilities. 1 Their communication barriers are even greater: many have limited health literacy skills (difficulty accessing, understanding, and acting on health information), limited English proficiency, 2 , 4 or physical or cognitive conditions that impede access to information. With the rapid proliferation of “consumer choice models” in many states, millions of Medicaid beneficiaries are now required to make complex decisions about health plan options and effectively using health care. 3 These decisions have important implications for the targeted beneficiaries regarding access to needed preventive, curative, and supportive services. 3 , 5 – 9 However, studies show that these populations have difficulty making such decisions—in part because of the poor quality of information they receive. 3 – 6 , 8 , 9 For example, in studies in which seniors on Medicaid used printed materials about health care choices, only 32% of those in Florida 3 and 25% of those in California 10 could understand the information. This is not surprising, as more than 250 studies indicate that printed materials related to health are written at reading levels greatly exceeding the average literacy skills of adults in the United States. 11 Theoretical guidance from socio-ecological, 12 social cognitive, 13 and transtheoretical models, 14 as well as 40 years of empirical research, suggest that health communication is more effective when it is relevant to people's personal and social contexts. 15 – 29 For this reason, interpersonal and tailored computer-mediated communication, which can be personalized, typically show better results than materials-based mass communication. 18 , 22 , 24 , 25 , 30 – 32 However, Medicaid programs primarily communicate with seniors and people with disabilities through printed materials, given the need for low-cost mass distribution and this population's limited access to both in-person advice and the Internet. Is there a way to reach these highly vulnerable groups effectively and affordably? Research from the past 20 years shows that using strategies to adapt printed mass communication resources more closely to the needs of population subgroups can improve outcomes. 15 – 29 These design principles include matching readability more closely to users' literacy levels and using “clear communication” formatting criteria, 33 – 35 incorporating culturally relevant concepts and graphics, 4 , 17 , 19 , 23 , 36 – 40 and adapting rather than literally translating material into other languages. 4 , 19 , 23 , 39 , 41 Such design principles are invaluable, but they can only approximate how real audiences use and react to health communication. For this reason, increasing emphasis is being placed on “participatory” or “user-centered” design—a structured approach that employs varied formative research methods to involve intended consumer and professional audiences as codevelopers of communication. 4 , 19 , 25 , 42 – 45 Guidelines from the US Department of Health and Human Services and its centers, including the Centers for Disease Control and Prevention and the National Cancer Institute, recommend participatory design as a primary strategy to develop health communication. 33 – 35 , 43 , 46 For the past 20 years, our center (Health Research for Action, www.uchealthaction.org ) has leveraged such guidance to create large-scale mass communication materials by and for diverse populations. Two decades of studies confirm that when users participate in designing and testing communication, outcomes are more successful, including those for vulnerable groups. 4 , 25 , 28 , 42 , 44 , 47 – 51 However, limited research is available about the detailed, iterative methods and steps involved in developing user-centered, materials-based mass communication—especially about how to adapt it for specific situations. In California, the Department of Health Care Services (DHCS) was concerned that fewer than 25% of Medicaid beneficiaries who were seniors or people with disabilities made active choices about health plans. By default, many beneficiaries could have plans ill suited for their health care needs. In 2006, the DHCS commissioned our center to use participatory processes to develop and test a guidebook about choosing and navigating health plans, intended for approximately 600 000 statewide Medicaid beneficiaries who were seniors and people with disabilities, in multiple language versions. Our objectives were to determine the (1) importance of participatory design in improving mass communication for diverse and vulnerable audiences, (2) methods to engage consumers and professionals in communication design and testing, (3) processes and outcomes of a project to create a user-designed guidebook for Medicaid beneficiaries, and (4) implications for health communication researchers and practitioners.
