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Abstract
Grant Number: 5G08LM007270-02 Project Title: Webtop Support: Consumer Cancer Information Specialists
PI Information: Name Title FORDIS, MICHAEL C. fordis@bcm.tmc.edu Abstract: An estimated 632,000 Americans are living with leukemia, lymphoma, and myeloma and an estimated 107,900 people in the U.S. were diagnosed in 1999. In this project, the considerable experiences of both the Center for Collaborative and Interactive Technologies at Baylor College of Medicine (BCM) and the Leukemia and Lymphoma Society (LLS) are combined to develop and deploy an information infrastructure and communication support system to address the emerging challenges of providing timely accurate and relevant responses to health information requests received by LLS. In 2000, LLS received 35,000 information inquiries, 60% by telephone and the remainder by e-mail (Website), letters, faxes, walk-ins and automated requests. Of these, 23,000 were handled directly by LLS Information Resource Center (IRC) Specialists. This volume is an indicator of the need for information and guidance that is not being met otherwise even through the Internet and/or discussions with healthcare givers. LLS projects that inquiries will approach 60,000 by 2003. LLS also notes that 25% of inquiries could not be handled immediately with LLS brochures, Websites, and other materials on hand; these inquiries were complex and required specific research by IRC Specialists or consultation with experts to answer. These more difficult information requests have placed an extraordinary burden on the IRC Specialists and have removed them from the "frontline" in providing needed patient information services and guidance. LLS has concluded that the society must address the growing demands for sophisticated information through technology-based communication systems that link both digital and human resources in support of the activities of IRC Specialists. The development of these new approaches will assist LLS to fulfill its mission of providing services to patients, families and caregivers. The proposed project will: (1) develop an information infrastructure (including digital and human resources) to provide support in answering questions and in advancing the continuing professional development and information needs of IRC specialists; (2) design, develop and deploy a Web-enabled information resource (including databases from NLM and NCI), a searchable response and update archive, and a communication and collaboration system delivered via a Webtop in support of the new information infrastructure; and (3) evaluate the utility of these collaborative approaches in enhancing communication between the IRC specialist and patient, family member, caregiver or other interested individuals. The partnership between BCM and LLS will provide a model for enhancing the outreach from academic health centers and libraries to provide state-of-the-art information in context to organizations using information intermediaries to provide information and guidance to the public, patients and family members, and health professionals.
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Institution: BAYLOR COLLEGE OF MEDICINE 1 BAYLOR PLAZA HOUSTON, TX 770303498 Fiscal Year: 2002 Department: ADMINISTRATION Project Start: 30-SEP-2001 Project End: 29-SEP-2003 ICD: NATIONAL LIBRARY OF MEDICINE IRG: BLR