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Reports/Papers/Presentations
Presentations at the AMIA Annual Symposia
AMIA 2001 Post-conference Meeting - Critical Issues in Consumer Health Informatics
AMIA 2002 -
Bio*Medical Informatics: One Discipline
Workshop 7
Overcoming Barriers to Provide Consumer Health Information
Workshop Leaders: Ben Gerber, MD, University of Illinois, Chicago, IL, P. Zoe Stavri, PhD, MLS, Oregon Health and Sciences University, Portland, OR, Tom K. Houston, MD, MPH, University of Alabama-Birmingham, Birmingham, AL, and Betty L. Chang, PhD, University of California Los Angeles, Los Angeles, CA.
Rapid developments in information technology offer better opportunities for consumer health information. Unfortunately, people with the greatest health burden often have the least access to health information and communication technologies. Multiple barriers contribute to disparities among different populations, including low literacy levels and language differences as well as economic, social, and cultural factors that may decrease access to technology. If Internet-based patient education is shown to improve health care outcomes may widen. In this workshop, participants will discuss common barriers to use of technology for disseminating electronic health information. In addition, potential solutions to these problems will be explored, including a variety of interventions, such as: providing chronic disease patient education using touch screen computers in urban clinical waiting areas; providing training, education, and tools in accessing and evaluating on-line health information; and incorporating 'lay health advisors' to promote usage of consumer health information in the community. Additional example studies and implementation efforts targeting underserved or vulnerable populations will be presented and discussed. Ample time will be available to review the interests and concerns of attendees in small and large group discussions.
Workshop 16
The Robert Wood Johnson "Exploring Online Healthcare in the Information Age" Project: Guidelines for Grantmakers and Grantseekers
Workshop Leaders: Tom Ferguson, MD, the Pew Internet & American Life Project, Austin, TX, and John Fiorillo, The Robert Wood Johnson Foundation, Princeton, NJ.
The "Dragging Healthcare, Kicking and Screaming into the Information Age" Project was initiated by the Robert Wood Johnson Foundation in January, 2002, to help foundations, government agencies, and other grantmakers and potential grantmakers develop effective strategies for funding research and demonstration projects in the emerging field of Consumer Health Informatics - and to help researchers and developers identify the most promising areas for future projects. This workshop discuss the origins and development of the project and will explain and discuss the key eight domains of consumer health informatics which the project identified: the individual on the Internet; online networks of friends and family members; online support groups and online patient-helpers; online support groups as collaborators in medical research; provider-supplied systems which support patient autonomy; interactions between e-patients and health professionals they have found on the interactions between providers and patient; and professionally-directed electronic interactions between providers and patients.
Session 26
Panel: Addressing Disparities in Access to Health Care Information for Vulnerable Populations
Authors: T.K. Houston, MD, MPH, Johns Hopkins University, Baltimore, MD, M.K. Campbell, PhD, MPH, University of North Carolina at Chapel Hill, Chapel Hill, NC, M. Cashen, RN, MS, University of California San Francisco, San Francisco, CA, P.C. Dykes, MA, RN, Columbia University, New York, NY, and B. Gerber, MD, University of Illinois at Chicago, Chicago, IL.
Disparities in accessing health information exist for various vulnerable populations. Reviewing access issues for those seeking and/or needing health information suggests that there are many factors that may inhibit access. These include a wide diversity in the education, background and needs of those seeking information, and the distribution of information among many disciplines and information sources. The most needy among this group may require extensive, multi-specialty health care and may have particular problems with access, treatment adherence and working with the health care system. Health care technology can provide the necessary tools to address these issues. The major objectives of this session are to (1) describe technological and behavioral strategies for overcoming specific barriers to access of health care information, (2) describe electronic methods used to provide health care information to low literacy individuals and the elderly, and (3) evaluate the response of patient and health care professionals in overcoming described barriers in chronic disease education. The panelists are professionals who have been developing, building, and evaluating systems to overcome obstacles in health care information access and coordination of health services for specific populations with chronic disease or health care access issues. This panel's presentation will be of interest to administrators, clinicians, health care educators, and health services researchers.
Session 49
Panel: Online Support Groups as Collaborators in Medical Research
Authors: Tom Ferguson, MD The Pew Internet & American Life Project The Pew Internet & American Life Project J. Cody, PhD, University of Texas Health Science Center, San Antonio, TX G. Frydman, Association of Online Cancer Resources, New York, NY J. Lester, Massachusetts General Hospital, Boston, MA N. Scherzer, The Life Raft Group, Little Falls, NJ.
Clinical research has traditionally been planned and conducted by professional researchers. And the patients who have served as subjects for clinical studies have typically played an entirely passive role-following researchers' directives and reporting their experiences privately, without "comparing notes" with fellow patients. With the coming of the Internet, some online support groups-electronically linked networks of patients who share the same health concerns-are beginning to play a more active role in supporting, initiating, and conducting clinical research. Some patient groups are helping medical researchers conduct professionally-directed studies. Other groups are turning the tables by recruiting researchers to help them develop patient-initiated studies. Still other online groups are conducting clinical research studies entirely on their own. The panel will open with an overview of the emerging role of condition-specific online support groups in medical research. We will present examples of both informal and formal research, discuss the advantages and disadvantages of various types of partnerships between researchers and patient groups, and comment on the role changes these new relationships may require, both for professionals and for patients. We will also discuss some of the advantages these new models may offer, e.g., research studies run by the subjects themselves can be easily updated, and the lag period between completion and reporting can be reduced. And since online support group members typically do not require payment, patient-initiated and patient-supported research may make it possible to conduct useful clinical studies in areas for which little or no outside research funding is available.
AMIA 2001 -
A Medical Informatics Odyssey: Visions of the Future and Lessons from the Past
Session 4
Panel: Decreasing Disparities in Access to Health Care for Vulnerable Populations
Authors: B.L. Chang, PhD, University of California Los Angeles, Los Angeles, CA, B. Gerber, MD, University of Illinois at Chicago, Chicago, IL, L. Schopp, PhD, University of Missouri-Columbia, Columbia, MO, J. Rl Mayo, PhD, Northeast Valley Health Corporation, Panorama City and M. Cashen, RN, MS, University of California, San Francisco, CA
Disparities in accessing health information exist for various vulnerable populations. Those on the 'other side' of the digital divide include people with cognitive, sensory, and motors impairments, stigmatized conditions, and those with limited income and literacty abilities. Moreover, the most needy among this group require extensive, coordinated, multi-specialty referrals and have particular problems with access and coordination. Health technology is well suited to accomplish this coordination. The major objectives of this session are to (a) describe technological and behavioral strategies for overcoming specific barriers to access, (b) analyze ways in which information on vulnerable populations can be shared effectively among different health care disciplines, and (c) evaluate the response of patient and health care professionals.
Session 20
Computing Systems for Consumers
Session Chair: R. Kukafka, DrPH, MA, Columbia University, New York, NY
Consumer Health Informatics: A Consensus Description and Commentary from American Medical Informatics Association Members
Authors: T.K. Houston, MD, MPH, Johns Hopkins University, Baltimore, MD, B.L. Chang, DNSc, University of California, Los Angeles, CA, S. Brown, MPH, Centers for Disease Control and Prevention, Atlanta, GA, and R. Kukafka, DrPH, MA, Columbia University, New York, NY.
Patients As Experts: A Collaborative Performance Support System
Authors: S.C. Porter, MD, MPH, Children's Hospital and Harvard Medical School, Boston, MA.
The Feasibility of Remote-controlled Assistance as A Search Tool for Patient Education
Authors: I.K.F. Lin, MS, University of Utah, Salt Lake City, UT, and Medical College of Wisconsin, Milwaukee, WI, B.E. Bray, MD, J.A. Smith, PhD, and L.L. Lang, RN, EdD, University of Utah, Salt Lake City, UT.
Requirements Development for a Patient Computing System
Authors: J.S. Wald, MD, MPH, L.A. Pedraza, MS, C.A. Reilly, PhD, RN, M.E. Murphy, RN, MBA, and G.J. Kuperman, MD, PhD, Partners HealthCare System, Boston, MA.
AMIA 1999 -
Cornerstones for a New Information Management Paradigm
Workshop 9
Consumers, Health Informatics, and the Media
Instructors: B.L. Chang, DNSc, University of California, Los Angeles, CA, K.W. Goodman, PhD, University of Miami, Miami, FL, J. Renner, MD, Health Scout, Westport, CT, and S.J. Scolamiero, Harvard Medical School, Boston, MA
For the first time in history, health care providers, consumers, and journalists have to deal with information overload. The potential for new informatics tools and media to influence health care decisions by consumers in unprecedented. The instructors in this workshop will discuss the effects of informatics developments on health care journalism, the emerging role of consumer-journalists, new and upcoming applications to help consumers and journalists cope with information overload, ethical implications of media participation in health care communication and decisions, and the role that AMIA could play to promote partnerships between consumer groups and media organizations.
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