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.].

PLAIN LANGUAGE SUMMARY: Research informed consent forms describe key information about research studies. People need this information to decide if they want to be in a study or not. A helpful form begins with a short, easy-to-read key information section. This study created a tool researchers can use to write the key information about their research people can read, understand, and use.

Effect of health literacy and shared decision-making on choice of weight-loss plan among overweight or obese participants receiving a prototype artificial intelligence robot intervention facilitating weight-loss management decisions.

Implementation of artificial intelligence (AI) in medical decision-making is still in early development. We developed an AI robot intervention prototype with a health literacy-friendly interface that uses interactive voice response (IVR) surveying to assist in decision-making for weight loss. The weight-specific health literacy instrument (WSHLI) and Shared Decision-Making Questionnaire (SDMQ) were used to measure factors influencing weight-loss decisions. Factors associated with participants choosing to lose weight were analyzed using logistic regression, and factors influencing the selection of specific weight-loss plans were examined with one-way analysis of variance. Our study recruited 144 overweight or obese adults (69.4% women, 58.3% with body mass index (BMI) ≥ 24). After interacting with the AI robot, 78% of the study population made the decision to lose weight. SDMQ score was a significant factor positively influencing the decision for weight-loss (odds ratio [OR]: 2.16, 95% confidence interval [CI]: 1.09-4.29, p = 0.027). Individuals who selected self-monitored lifestyle modification (mean ± SD: 11.52 ± 1.95) had significantly higher health literacy than those who selected dietician-assisted plan (9.92 ± 2.30) and physician-guided treatment (9.60 ± 1.52) (both p = 0.001). The study results demonstrated that our prototype AI robot can effectively encourage individuals to make decisions regarding weight management and that both WSHLI and SDMQ scores affect the choice of weight-loss plans.

An Evaluation of an Environmental Health Infographic in Community Settings.

Background: Infographics are an effective way of communicating complex information due to their reliance on concise language and clear, uncluttered visuals. Research indicates that traffic-related ultrafine particles (UFPs) in air pollutions adversely affect human health, including respiratory and cardiovascular diseases. In this study, we work with community-based adult literacy programs to develop an infographic about UFPs in air pollution with the goal of community-driven problem solving related to traffic-related UFPs within affected neighborhoods. Objective: In this paper, we discuss the development and evaluation of an infographic about the dangers of UFPs from traffic pollution, and actions that readers in affected communities can take to protect their health. We used the infographic format to conceptualize UFP pollution and its health effects visually for community members many of whom are new immigrants and do not speak English as their first language. Methods: We conducted 1 focus group and 4 interviews over Zoom, and collected 74 anonymous surveys among Boston Chinatown and Somerville, MA residents. Community partner organizations assisted us in recruiting participants by sending a recruitment flyer to their email contacts and identifying specific people who were interested in participating. Key Results: Data from the surveys, focus group, and interviews yielded 8 themes that guided the revision of the infographic. The majority of the participants responded positively to the infographic: 95.9% (n = 71) of respondents reported that the purpose of the infographic was clear, that the infographic contained a clear message, and that the infographic uses images to explain important points. Conclusions: Our experience developing and evaluating an infographic about near highway pollution in environmental justice communities suggests that infographics can be a viable communication tool in this context. Further research with infographics of a similar nature but in diverse communities is needed to strengthen our conclusion.

Building Health Literacy Coalitions and NGOs.

This report describes several health literacy initiatives by non-governmental organizations (NGOs). Specifically, the authors discuss the vision, history, and establishment of the International Health Literacy Association and similar regional organizations, as examples of collaboration across professional and geographic boundaries to advance health literacy research and practice. The authors provide some observations to build future health literacy initiatives by NGOs around the world.

The Role of Environmental Health Literacy When Developing Traffic Pollution Fact Sheets for Puerto Rican Adults.

Environmental health literacy is particularly relevant to racial/ethnic and linguistic minority populations who are likely to live near major roadways and highways. We conducted exploratory research to develop ways to communicate the risks of traffic-related air pollution to Puerto Rican adults living in and near Boston, Massachusetts. We held two initial focus groups with Spanish-speaking Puerto Rican adults (N = 16) enrolled in the Boston Puerto Rican Health Study (BPRHS). Most had only a high school education or less and earned a low income. We used thematic analysis of transcripts to suggest ways to improve three fact sheets designed to communicate BPRHS findings to the community. Based on these results, we made substantial revisions. We then conducted a second set of two focus groups with the same participants to assess revisions. Participants viewed the revised fact sheets more favorably and indicated that they found them easier to read. Lessons learned about improving readability and relevance included increasing text size, adding more graphics, chunking text, and providing more technical details. Designing successful environmental health communication tools that retain scientific accuracy is not a simple task. There is need for systematic attempts to evaluate and report on health literacy and community engagement processes for developing materials that are easy to read, culturally relevant, and that communicate complex environmental health information and concepts in ways people can understand and act on.

Learning from the Field and Its Listserv: Issues That Concern Health Literacy Practitioners.

This study assesses the content of email messages posted to the Health Literacy Discussion List (HLDL) during a two-year period. The study identifies issues of concern to list subscribers, describes the purposes the list serves for health professionals, and contributes to the health literacy literature by providing an email listserv as a research corpus. The authors conducted an inductive qualitative analysis of email posts to the HLDL from October 2013 to October 2015. Using an iterative process, the authors identified descriptive categories for types of posts and topics of posts. The first (SKR) and second (JM) authors reviewed subject lines of all 2,036 posts and brainstormed type and topic categories, independently read and sorted a random sample of 200 posts into those categories, and then discussed discrepancies. Based on the latter experience, the authors combined, added, or excluded certain categories and jointly created a detailed description for each type and topic category. We then sorted another random sample of 200 posts and generated a list of key words relating emails to topic categories. A Cohen's kappa reliability coefficient was calculated to establish intercoder reliability. The third author (RVR) then conducted key word searches for sorting the remaining 1,836 email posts. The existence and frequency of email clusters and the content of emails in these clusters were used to identify and explore in greater detail the "hot topics" of interest to the field. Our analysis suggests the utility of the HLDL as a platform for sharing information and resources, announcements and calls for action, technical assistance and professional discourse.

The health information literacy research project.

OBJECTIVES: This research studied hospital administrators' and hospital-based health care providers' (collectively, the target group) perceived value of consumer health information resources and of librarians' roles in promoting health information literacy in their institutions. METHODS: A web-based needs survey was developed and administered to hospital administrators and health care providers. Multiple health information literacy curricula were developed. One was pilot-tested by nine hospital libraries in the United States and Canada. Quantitative and qualitative methods were used to evaluate the curriculum and its impact on the target group. RESULTS: A majority of survey respondents believed that providing consumer health information resources was critically important to fulfilling their institutions' missions and that their hospitals could improve health information literacy by increasing awareness of its impact on patient care and by training staff to become more knowledgeable about health literacy barriers. The study showed that a librarian-taught health information literacy curriculum did raise awareness about the issue among the target group and increased both the use of National Library of Medicine consumer health resources and referrals to librarians for health information literacy support. CONCLUSIONS: It is hoped that many hospital administrators and health care providers will take the health information literacy curricula and recognize that librarians can educate about the topic and that providers will use related consumer health services and resources.