A long and yet unfinished history of investigating how individual capabilities and social processes explain or predict health indicates that poor education, low literacy, poor health and early death are strongly linked around the world. However, the complexity of those relationships is not fully understood. In this article, we propose an expanded model of health literacy characterized by four domains: fundamental literacy (reading, writing, speaking and numeracy), science literacy, civic literacy and cultural literacy. To explore the utility of this model, we examine selected pieces of the public discourse about terrorism and bioterrorism that dominated the mass media during the anthrax threat in the United States during 2001. We conclude that this model of health literacy is useful to analyze health communication, to aid in constructing more understandable and appropriate health communication, and ultimately can lead to the development of a new measure to assess health literacy skills in individuals.

Purpose Although improvements in perioperative care have decreased surgical morbidity following radical cystectomy for muscle invasive bladder cancer (MIBC), treatment side effects still have a negative impact on patients’ quality of life (QOL). This study examines patients’ unmet needs along the illness trajectory. Methods and Materials Thirty patients (26.7% women) treated with cystectomy and urinary diversion for MIBC participated in the study. Patients were recruited from the Department of Urology at Mount Sinai and through advertisements on the Bladder Cancer Advocacy Network website between December, 2011 and September, 2012. Data were collected through individual interviews. The interviews were audio-taped and transcribed. Qualitative analyses of transcribed data were used to explore key unmet needs. Results At time of diagnosis, unmet informational needs were predominant, consisting of insufficient discussions of these topics: urinary diversion options and their side-effects, self-care, recovery process, and medical insurance. Unmet psychological needs related to depression and worries about changes in body image and sexual function were reported. Post-surgical unmet needs revolved around medical (e.g., pain, bowel dysfunction), and instrumental needs (e.g., need of support with use of stomal appliances, catheters, and incontinence). During survivorship (i.e., from 6 to 72 months following surgery), unmet needs centered around psychological (i.e., depression, poor body image, sexual dysfunction) and instrumental support (e.g., difficulty adjusting to changes in daily-living). Conclusions Meeting patients’ needs is imperative to ensure patients’ adequate involvement in their healthcare, and to enhance post-surgical QOL. An effective support provision plan should follow changes in patients’ needs.

BackgroundElectronic health information (eHealth) tools for patients, including patient-accessible electronic medical records (patient portals), are proliferating in health care delivery systems nationally. However, there has been very limited study of the perceived utility and functionality of portals, as well as limited assessment of these systems by vulnerable (low education level, racial/ethnic minority) consumers.ObjectiveThe objective of the study was to identify vulnerable consumers’ response to patient portals, their perceived utility and value, as well as their reactions to specific portal functions.MethodsThis qualitative study used 4 focus groups with 28 low education level, English-speaking consumers in June and July 2010, in New York City.ResultsParticipants included 10 males and 18 females, ranging in age from 21-63 years; 19 non-Hispanic black, 7 Hispanic, 1 non-Hispanic White and 1 Other. None of the participants had higher than a high school level education, and 13 had less than a high school education. All participants had experience with computers and 26 used the Internet. Major themes were enhanced consumer engagement/patient empowerment, extending the doctor’s visit/enhancing communication with health care providers, literacy and health literacy factors, improved prevention and health maintenance, and privacy and security concerns. Consumers were also asked to comment on a number of key portal features. Consumers were most positive about features that increased convenience, such as making appointments and refilling prescriptions. Consumers raised concerns about a number of potential barriers to usage, such as complex language, complex visual layouts, and poor usability features.ConclusionsMost consumers were enthusiastic about patient portals and perceived that they had great utility and value. Study findings suggest that for patient portals to be effective for all consumers, portals must be designed to be easy to read, visually engaging, and have user-friendly navigation.

Objective The goals of this study were to identify the demands associated with using electronic personal health records (PHRs) and to evaluate the ability of adults of lower socioeconomic status and low health literacy to use PHRs to perform health management activities. Background PHRs are proliferating in clinical practices and health care organizations. These systems offer the potential of increasing the active involvement of patients in health self-management. However, little is known about the actual usability of these tools for health consumers. Method We used task analysis and health literacy load analysis to identify the cognitive and literacy demands inherent in the use of PHRs and evaluated the usability of three currently available PHR systems with a sample of 54 adults. Participants used the systems to perform tasks related to medication management, interpretation of lab/test results, and health maintenance. Data were also gathered on the participants’ perception of the potential value of using a PHR. Results The results indicated that a majority of the participants had difficulty completing the tasks and needed assistance. There was some variability according to task and PHR system. However, most participants perceived the use of PHRs as valuable. Conclusions Although considered a valuable tool by consumers, the use of PHR systems may be challenging for many people. Strategies are needed to enhance the usability of these systems, especially for people with low literacy, low health literacy, or limited technology skills. Application The data from this study have implications for the design of PHRs.