The goal of this study is to critically examine health information sources in order to determine whether Aboriginal women are represented in these resources, and if so, how they are being presented. This research is intended to illuminate the practices around the construction of information, and to demonstrate that the manners in which information is conveyed can be problematic. To accomplish these goals, critical discourse analysis was utilized to explore both consumer health publications available to pregnant women in Edmonton, Alberta, as well as academic publications available to students and healthcare providers through the University of Alberta Libraries. Through this critical analysis of these resources, it is clear that information is being constructed in a manner that supports neocolonial practices and reinforces negative stereotypes of Aboriginal women. The analysis of these sources also demonstrates ways in which information can be constructed more appropriately, to avoid racializing tendencies.

INTRODUCTION: Electronic health resources are becoming prevalent. However, consumer health information is still predominantly text based. Relying on text alone to deliver health information may not be the most effective way to promote learning or sufficient to meet consumer needs. OBJECTIVES: This study assessed a) whether adding images to text and/or replacing text with narration influenced memory for Consumer Medication Information (CMI), b) if participants perceived CMI formats differently in terms of comprehensibility, utility, or design quality, and if they preferred one format overall c) what participants’ information needs were with respect to CMI. METHODS: Participants’ (N = 36) remembered CMI presented in three formats: 1) Text, 2) Text + Images, and 3) Narration + Images. Additionally, participants rated the three CMI formats in terms of comprehensibility, utility, design quality and overall preference. Semi-structured interviews were used to investigate participants’ opinions and preferences regarding the CMI formats, as well as their experiences with CMI and information needs. RESULTS: No significant differences in memory were observed, F(2, 70) = 0.1, p = 0.901. Thus, this study did not find evidence that Mayer’s (2001) multimedia or modality principles apply to CMI. Despite the absence of effects on memory, CMI format impacted perceptions of the material. Participants rated the Text + Images format highest in terms of comprehensibility, X2(2) = 26.5, p < .001 and design quality, X2(2) = 35.69, p < .001. However, after correcting for multiple comparisons, no significant differences in utility ratings between the three formats were observed, X2(2) = 8.21, p < .016. Further, overall preferences revealed that the most participants’ chose the Text + Images format as their favourite (n = 27, 75%) and Text as their least favourite (n = 23, 63.8%). Directed and conventional content analysis were used to explore participants’ CMI preferences and information needs. Various aspects related to provision, comprehensibility, utility, and design quality all appeared to affect perceptions of CMI and whether or not participants used or would use it. Results of this analysis, paired with evidence from other studies, were used to develop a model proposing factors that influence CMI use. CONCLUSION: This study investigated the potential impact of design and distribution changes on perceptions of CMI. Despite the lack of differences in memory, participants’ perceptions of the formats differed. Findings from this study could be used to inform future research on how CMI could be designed to better suit the needs of consumers and potentially increase the likelihood it is used. / Graduate

The aim was to explore experiences and needs of information following a prenatal diagnosis of congenital heart defect, and to assess the quality of publicly available information websites about congenital heart defects. Study I was a qualitative interview study that explored experiences among 11 parents to prenatally diagnosed children. Respondents tried to grasp the facts today while reflecting on the future, and personal contact with medical specialists was valued. The analysis showed that the Web contained an overwhelming amount of information. Study II was a qualitative interview study that explored experiences among 26 females and males 5-15 weeks after a prenatal diagnosis. Respondents hunted for information in a confusing reality, with a need for information about various topics and methods for information delivery. Although high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Supplemental information was sought via the Web. Insufficient information about induced abortions was described. Study III was a quantitative study that explored content and quality of 67 English websites about congenital heart defects. Few websites included information about prenatal aspects, such as pregnancy termination. The overall quality was poor, especially reliability and information about treatment choices. Study IV was a mixed methods study that explored the quality of 10 Swedish websites about congenital heart defects, from the perspectives of 9 assessors with personal experience of a prenatal diagnosis. Quantitative Likert scale assessments were followed by written open-ended questions and focus group discussions. Quantitative assessments represented unfulfilled quality criterion for treatment choices, and partially fulfilled quality criteria for appearance, details, relevance, suitability and overall quality. Websites had significantly different scores for all investigated quality criteria. Various issues were highlighted in the responses to the open-ended questions and during the discussions, including inappropriate advertisements, biased information, poor illustrations, complex language and poor trustworthiness. In conclusion, expectant parents faced with a prenatal diagnosis of congenital heart defect in the fetus try to grasp the unexpected, an attempt that involves difficulties in relation to information. These are present during the consultation with health professionals and when searching for web-based information.

Objectives: The purpose of this presentation is to analyze a statewide consumer health training program that involved a partnership between academic and public libraries. The project was conducted from 2004–2010. Over 250 participants from public libraries received MLA’s Consumer Health Information Specialization Level 1 certificate as a result of the project. Methods: Participants from the public libraries were interviewed either individually or in small groups. Thoughts on the classes, their experience with consumer health information, and MedlinePlus as a product were elicited from the participants. Their observations were recorded. The findings were analyzed, and dominant themes were identified. Results: The motivation behind this effort was reports that the first place people with a new diagnosis go for information is the public library. Anecdotal evidence shows that the participants enjoyed the classes and felt empowered by the training. Many expressed interest in continuing training. Conclusions: Public libraries are valuable partners for medical librarians. We wanted to look for evidence to see if there was any value in this project in order to know whether to repeat it in the future or whether to promote it as a model to other geographical areas

Indiana University-Purdue University Indianapolis (IUPUI) / Autoimmune Hepatitis (AIH), an incurable chronic condition of unknown cause where the body attacks its own liver, is a rare disease, with a current diagnosed worldwide prevalence of < 150,000. Inadequately treated, AIH can cause progressive liver damage and ultimately liver failure. A wide variety of symptoms are associated with AIH including severe fatigue, joint pain, depression, anxiety, and insomnia. While precision medicine’s genomics has attempted to shed light on the disease, other non-molecular “-omics” approaches can be taken in studying AIH patients, who often utilize social media to gather information from other patients or care providers to apply to their own AIH disease course. It is proposed that these patient-generated social mediomes can create self-report health records for patients – and facets of their lives - otherwise unreachable by conventional research. In this feasibility study, I examined in an exploratory fashion the social mediome of a large (N > 1000) gathering of AIH patients and caregivers as present on a Facebook Group to determine the potential of mining various types health-related user information. The following types of information were mined, with feasible indicating a reliability of F >= 0.670: 1) Types of health information shared and structures of information sharing (Feasible) 2) Types and directionality of support provided by and to users (Portions feasible) 3) Clinical factors (AIH-related and otherwise) disclosed by users a. Medication intake (Feasible) b. Signs and symptoms (including pain and injury) and diagnosed comorbidities (Portions feasible) c. Results of disease monitoring blood tests (Portions feasible) 4) Contextual (non-clinical; environmental; social) factors disclosed by users (Detection of which type of factor discussed occasionally feasible). The resulting knowledge is required to adequately describe the disease not only clinically, but also environmentally and socially, and will form part of the basis for future disease studies.

Librarians at the East Tennessee State University (ETSU) Quillen College of Medicine Library have provided consumer health outreach services to rural and underserved populations at Remote Area Medical (RAM) clinics since 2009. These outreach services heavily depend upon and promote consumer health websites and National Library of Medicine (NLM) resources in order to reach the largest number of people at the lowest possible cost. This article will provide a brief overview of RAM clinics in Wise, VA, and Gray, TN, served by ETSU librarians for years. Additionally, this article will discuss the evolution of ETSU QCoM librarian outreach initiatives relating to these clinics over the past decade. This article includes a list of online consumer health resources used to support these initiatives as well as a list of most commonly addressed consumer health topics.

Librarians can be major contributors at multihealth profession community outreach efforts. East Tennessee State University Quillen College of Medicine Library (ETSU QCOML) partnered with the Remote Area Medical Group (RAM) at two health "expeditions" in northeastern Tennessee to provide consumer health information to the people who came to the event for medical, dental, and vision care. A booth staffed by library workers that utilized MedlinePlus.gov was set up at each event. Preselected handouts were used along with online searching. The library booth was able to provide consumer health information to 1,310 people. By participating in this event, it allowed not only the library workers to assist the public with consumer health questions but also exposed other health care professionals to what medical librarians can do to directly help patients.

The purpose of this project was to provide better consumer health information and services to a patient population of a hospital-based nursing home. Nintendo Wii® devices were purchased to improve physical activity of patients in the nursing home. All nurses were trained to use MedlinePlus®. MedlinePlus materials were added to the consumer health library in the hospital, and DVD players were purchased for watching consumer health videos. The capacity of the nursing home and hospital to deliver consumer health information to patients and their families has been improved. This project was a great way to introduce a health care system to the services and products of the National Library of Medicine and empower the staff to better provide consumer health information.

East Tennessee State University Quillen College of Medicine Library (ETSUQCOML) developed a training program to enable public libraries, public health workers, and rural hospital staff to be consumer health information providers. Four NN/LM-developed classes were taught to public libraries. Regional public library directors were invaluable in obtaining the concurrence of their boards for release time for class attendance. Classes were also developed for the public health workforce and rural hospital staff. Five-hundred thirty-three students attended the classes. Fifty-two public library workers will receive the MLA's Consumer Health Information Specialist certification. Thirty-one public libraries have joined NN/LM. All ordered MedlinePlus marketing materials for their libraries from InformationRx.org.

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