Social and Behavioral Sciences Commons^™

Standardization Of Questions In Rare Disease Registries: The Prism Library Project, Rachel L. Richesson, Denise Shereff, James E. Andrews

School of Information Faculty Publications

Background: Patient registries are often a helpful first step in estimating the impact and understanding the etiology of rare diseases - both requisites for the development of new diagnostics and therapeutics. The value and utility of patient registries rely on the use of both well-constructed structured research questions and relevant answer sets accompanying them. There are currently no clear standards or specifications for developing registry questions, and there are no banks of existing questions to support registry developers.

Objective: This paper introduces the [Rare Disease] PRISM (Patient Registry Item Specifications and Metadata for Rare Disease) project, a library of standardized …

The Use Of An Online Forum For Health Information By Married Korean Women In The United States, Soojung Kim, Jungwon Yoon

School of Information Faculty Publications

Introduction. The purpose of this study is to examine the use of an online health forum by married Korean women living in the USA who sought help for health and medical issues.

Method. A thousand messages posted to a health forum designed for married Korean women living in the USA were collected in September 2010.

Analysis. Content analysis of the messages identified the purposes of asking questions, relationship between enquirers and patients, major topics of questions, whether questions were asked before or after consulting a doctor, and more.

Results. A typical questioning behaviour in the forum …

An Overview Of Web Archiving, Jinfang Niu

School of Information Faculty Publications

This overview is a study of the methods used at a variety of universities, and international government libraries and archives, to select, acquire, describe and access web resources for their archives. Creating a web archive presents many challenges, and library and information schools should ensure that instruction in web archiving methods and skills is made part of their curricula, to help future practitioners meet those challenges. In preparation for developing a web archiving course, the author conducted a comprehensive literature review. The findings are reported in this paper, along with the author's views on some of the methods in use, …

Functionalities Of Web Archives, Jinfang Niu

School of Information Faculty Publications

The functionalities that are important to the users of web archives range from basic searching and browsing to advanced personalized and customized services, data mining, and website reconstruction. The author examined ten of the most established English language web archives to determine which functionalities each of the archives supported, and how they compared. A functionality checklist was designed, based on use cases created by the International Internet Preservation Consortium (IIPC), and the findings of two related user studies. The functionality review was conducted, along with a comprehensive literature review of web archiving methods, in preparation for the development of a …

Health Numeracy Confidence Among Racial/ Ethnic Minorities In Hints 2007: Sociodemographic, Attitudinal, And Knowledge Correlates, Hong Huang, Yiu Ming Chan, Dong Feng

School of Information Faculty Publications

Health numeracy skills help people interpret health risks, and make effective medical decisions. Lower health numeracy confidence was observed for blacks and Hispanic groups than whites. Little is known about the important factors that explain racial differences in health numeracy confidence. For this study, we used a nationally representative, cross-sectional data sample of 4,610 U.S. adults from the National Cancer Institute’s 2007 Health Information National Trends Survey. Bivariate (Chi-squares) and multiple logistic regression analyses were conducted to identify the contribution factors that predict health numeracy confidence. Non-linear Fairlie decompositions were used to quantify the factor contributions to racial differences in …