The "long tail" and public health: new thinking for addressing health disparities.

The prevailing approach to improving population health focuses on shifting population means through a few targeted and universal interventions. The success of this approach for eliminating health disparities depends on an assumption about the distribution of demand for such interventions. We explored whether long tail thinking from business might yield greater progress in eliminating disparities. We examined 2011 to 2013 data from 513 state and local health agency representatives in 47 states who used an online system to create 4351 small media and client reminder products promoting colorectal cancer screening. Products in the long tail were more likely to target minority groups with higher rates of colorectal cancer and lower rates of screening than Whites. Long tail thinking could help improve the public's health and eliminate disparities.

Health Literacy INDEX: development, reliability, and validity of a new tool for evaluating the health literacy demands of health information materials.

There is no consensus on how best to assess the health literacy demands of health information materials. Comprehensive, reliable, and valid assessment tools are needed. The authors report on the development, refinement, and testing of Health Literacy INDEX, a new tool reflecting empirical evidence and best practices. INDEX is comprised of 63 indicators organized into 10 criteria: plain language, clear purpose, supporting graphics, user involvement, skill-based learning, audience appropriateness, user instruction, development details, evaluation methods, and strength of evidence. In a sample of 100 materials, intercoder agreement was high: 90% or better for 52% of indicators, and above 80% for nearly all others. Overall scores generated by INDEX were highly correlated with average ratings from 12 health literacy experts (r = 0.89, p < .0001). Additional research is warranted to examine the association between evaluation ratings generated by INDEX and individual understanding, behaviors, and improved health. Health Literacy INDEX is a comprehensive tool with evidence for reliability and validity that can be used to evaluate the health literacy demands of health information materials. Although improvement in health information materials is just one aspect of mitigating the effects of limited health literacy on health outcomes, it is an essential step toward a more health literate public.

Increasing information-seeking about human papillomavirus vaccination through community partnerships in African American and Hispanic communities.

This study tested the feasibility of promoting 1-800-4-CANCER through partnerships with organizations serving African American and Hispanic communities. Small-media and client reminders about human papillomavirus vaccination were made available through local agents to 28 community organizations. Organizations ordered 79 932 resources and distributed them to young women and parents of girls-;African Americans in St Louis, Missouri, and Hispanics in the Lower Rio Grande Valley of Texas. Pre- to postintervention calls to 1-800-4-CANCER increased 38% in these communities, while declining 15% in comparison communities of Kansas City, Missouri, and El Paso, Texas (F = 8.6, P = .004) and 1.4% in the United States as a whole.

How Health Literacy Can Enhance the Design and Conduct of Clinical Trials from Consent to Conclusion.

Health literacy research and interventions have provided multiple tools to improve communication between professionals and patients in clinical contexts for many years. Despite the reality that many patients participate in clinical trials in conjunction with standard medical care, only recently have efforts extended to address and improve the health literacy of both clinical trial researchers and participants. To date, the primary focus of health literacy activities in clinical trials has centered on communicating trial results to trial participants. This report describes the opportunities and strategies necessary to layer health literacy activities across the clinical trial process from consent to conclusion.

Unintended effects of emphasizing disparities in cancer communication to African-Americans.

Little is known about how minority groups react to public information that highlights racial disparities in cancer. This double-blind randomized study compared emotional and behavioral reactions to four versions of the same colon cancer (CRC) information presented in mock news articles to a community sample of African-American adults (n = 300). Participants read one of four articles that varied in their framing and interpretation of race-specific CRC mortality data, emphasizing impact (CRC is an important problem for African-Americans), two dimensions of disparity (Blacks are doing worse than Whites and Blacks are improving, but less than Whites), or progress (Blacks are improving over time). Participants exposed to disparity articles reported more negative emotional reactions to the information and were less likely to want to be screened for CRC than those in other groups (both P < 0.001). In contrast, progress articles elicited more positive emotional reactions and participants were more likely to want to be screened. Moreover, negative emotional reaction seemed to mediate the influence of message type on individuals wanting to be screened for CRC. Overall, these results suggest that the way in which disparity research is reported in the medium can influence public attitudes and intentions, with reports about progress yielding a more positive effect on intention. This seems especially important among those with high levels of medical mistrust who are least likely to use the health care system and are thus the primary target of health promotion advertising.

A novel intervention using interactive technology and personal narratives to reduce cancer disparities: African American breast cancer survivor stories.

PURPOSE: There has been a paucity of interventions developed for African American women to address persistent health disparities between African American and Caucasian breast cancer patients. We developed and piloted a technologically innovative, culturally targeted, cancer-communication intervention for African American breast cancer patients using African American breast cancer survivor stories. METHODS: We rated 917 clips from a video library of survivors' stories for likability, clarity and length, and emotional impact (scaled responses) and categorized each clip by theme (Coping, Support and Relationships, Healthcare Experiences, Follow-up Care, Quality of Life, and Treatment Side Effects). We selected 207 clips told by 35 survivors (32-68 years old; 4-30 years after diagnosis), fitting one of 12 story topics, for inclusion in the interactive video program loaded onto a touch-screen computer. Videos can be searched by storyteller or story topics; stories with the strongest emotional impact were displayed first in the video program. RESULTS: We pilot tested the video program with ten African American breast cancer survivors (mean age, 54; range 39-68 years), who, after training, watched videos and then evaluated the stories and video-program usability. Survivor stories were found to be "interesting and informative," and usability was rated highly. Participants identified with storytellers (e.g., they "think a lot like me," "have values like mine") and agreed that the stories convinced them to receive recommended surveillance mammograms. CONCLUSIONS: This novel, cancer-communication technology using survivor stories was very favorably evaluated by breast cancer survivors and is now being tested in a randomized controlled clinical trial. IMPLICATIONS FOR CANCER SURVIVORS: Breast cancer survivors can draw support and information from a variety of sources, including from other breast cancer survivors. We developed the survivor stories video program specifically for African American survivors to help improve their quality of life and adherence to follow-up care. Breast cancer survivors' experiences with treatment and living with cancer make them especially credible messengers of cancer information. Our novel, interactive technology is being tested in a randomized controlled trial and will be more broadly disseminated to reach a wider audience.

Development of a spiritually based breast cancer educational booklet for African American women.

Breast cancer is a significant health problem among African American women. Since the church is a viable health education venue for this population, spiritual cancer communication is a timely area of study to promote cancer education. In partnership with an African American church, we developed an educational booklet on breast cancer early detection from within a spiritual framework. Working with an advisory panel of women from the church, we facilitated the development of the booklet content and design. Panel members selected the spiritual themes and scripture used to frame the early detection messages, and they wrote messages to be included in the booklet. Meetings with focus groups were conducted to generate feedback on the booklet design and content. Overall feedback from the advisory panel and three focus groups regarding this level 4 spiritually based cancer communication intervention for African American women was generally consistent, showing strong preferences for design and content. We believe that this spiritually based approach may be one way to make cancer communication more culturally appropriate for African American women.