Health Information Literacy Outreach: Meeting the Needs of the Latino Community in Providence, Rhode Island and Rural Seniors in Western Maine

Purpose: To guide decisions related to a new approach to health information outreach and set in motion partnerships with community-based organizations and agencies. Audience: Providence Rhode Island’s Latino community and rural residents in the Western Maine Health District (Androscoggin, Franklin, and Oxford counties). Methodology: Social Cognitive Theory informed the development of a semi-structured key informant interview protocol. Questions were designed to determine confidence in using the Internet to find health information and the availability community resources that support access to computers and the Internet, including possible role models. Interviews were conducted in person and at a time and place convenient to the interviewee. All questions were open-ended, followed by probes to elicit greater detail. Interview data were coded and organized into major themes and sub-themes. It is within the sub-themes and direct quotes that patterns emerge. Results: Nine key informants, service providers in CBOs, libraries, and schools were interviewed in Western Maine. Data were organized into six major themes and 24 sub-themes. From these data we learned that communities in Western Maine have a growing senior population and that community-based organizations are important to supporting public health efforts. Health topics of concern include chronic diseases such as diabetes and heart disease, and cancer. The public school system, adult education programs, and public libraries offer access to computers, and opportunities for training and support. Ten key informants, service providers in CBOs, libraries, and health care were interviewed in Providence, Rhode Island. Data were organized into six major themes and 23 sub-themes. From these data we learned that Latinos in this community begin looking for health information by asking the people they know and trust. Health topics of concern include issues related to health insurance and access to care, chronic diseases like diabetes, and family and childhood health and that the radio is an important source of health information. Adult education programs, public libraries, and a network of minority health centers offer access to computers, and opportunities for training and support. These findings led the NN/LM – NER to tailor their health information outreach efforts in Western Maine to seniors and to work with public health coalitions and agencies directly serving seniors to increase awareness and use of NIHSeniorHealth. In Providence, Rhode Island these findings led us to develop a train-the-trainer health information outreach model working with foreign trained health professionals to teach others in the community about reliable health information resources including MedlinePlus in Spanish and to work with local radio. Discussion: An intensive community assessment effort is critical to developing a focused health information literacy outreach program. These data and the process of gathering these data helped the program tailor efforts to meet the needs of the community and identified community leaders, local organizations, and other potential partners to improve community access to reliable health information. While the results of this community assessment are not generalizable, the approach provides a much needed practical understanding of the community and how best to address the needs and utilize available resources. Presented at the Institute for Healthcare Advancement\u27s Health Literacy Conference, Irvine, California, May 5, 2011

Focused Outreach Evaluation Report: Providence RI, and Western Maine Health District

Recognizing the need to improve health information outreach to special populations, the National Network of Libraries of Medicine – New England Region (NN/LM NER) targeted its core outreach services in a focused geographic area. The purpose of the focused outreach approach was to increase access to accurate and reliable health information in communities experiencing health disparities; and to collect process and outcomes evaluation data for program improvement. The project was conceptualized in three phases: 1) Community Assessment: a systematic approach to understanding the community and connecting NN/LM NER with community-based organizations serving the targeted population; 2) Focused Outreach Implementation: a tailored approach using the existing promotional framework of NN/LM NER and its resources; and 3) Evaluation: a comprehensive approach to looking at and documenting the process of conducting focused health information outreach and assessing outputs and outcomes as a way of measuring the effectiveness of the model. Two communities were selected for focused outreach – Providence, Rhode Island’s Latino community and rural residents in Western Maine (Androscoggin, Franklin and Oxford Counties)

Development of a New Tool for Writing Research Key Information in Plain Language

Background: The complexity of research informed consent forms makes it hard for potential study participants to make informed consent decisions. In response, new rules for human research protection require informed consent forms to begin with a key information section that potential study participants can read and understand. This research study builds on exiting guidance on how to write research key information using plain language. Objective: The aim of this study was to develop a valid and reliable tool to evaluate and improve the readability, understandability, and actionability of the key information section on research informed consent forms. Methods: We developed an initial list of measures to include on the tool through literature review; established face and content validity of measures with expert input; conducted four rounds of reliability testing with four groups of reviewers; and established construct validity with potential research participants. Key Results: We identified 87 candidate measures via literature review. After expert review, we included 23 items on the initial tool. Twenty-four raters conducted 4 rounds of reliability testing on 10 informed consent forms. After each round, we revised or eliminated items to improve agreement. In the final round of testing, 18 items demonstrated substantial inter-rater agreement per Fleiss' Kappa (average = .73) and Gwet's AC1 (average = .77). Intra-rater agreement was substantial per Cohen's Kappa (average = .74) and almost perfect per Gwet's AC1 (average = 0.84). Focus group feedback (N = 16) provided evidence suggesting key information was easy to read when rated as such by the Readability, Understandability and Actionability of Key Information (RUAKI) Indicator. Conclusion: The RUAKI Indicator is an 18-item tool with evidence of validity and reliability investigators can use to write the key information section on their informed consent forms that potential study participants can read, understand, and act on to make informed decisions. [HLRP: Health Literacy Research and Practice. 2024;8(1):e29–e37.