Gary L. Kreps
National Cancer Institute

Usability's helping hand: Delivering usable and useful online health information/Assistance utilisable: Procurer des renseignements médicaux utiles et utilisables en ligne

James Mathews
Susan Molloy Hubbard
National Cancer Institute

Participatory design for better interactive health communication: A statewide model in the USA/ Mise au point d'un site avec la participation des usagers afin d'améliorer la communication entre le service médical et les malades: Un modèle qui pourrait servir dans tous les Etats Unis

Linda Neuhauser
Univerity of California, Berkeley

Challenges to producing and implementing the Consider This web-based smoking prevention and cessation program/ Difficultés rencontrées dans la production et la mise en oeuvre du site Choisissez le W3 pour la lutte contre le tabagisme.

John R. Hall
Bryan J. Ax
Cynthia A. Frank
The University of Arizona

Melissa A. Brown
AMC Cancer Research Center

David B. Buller
Cooper Institute

W. Gill Woodall
University of New Mexico

Ron Borland
Anti-Cancer Council of Victoria, Australia

Creating intrinsically motivating health messages with interactive multimedia: Targeting and testing adolescent populations/ Créer des messages de santé publique intrinséquement motivants avec des multimedias interactifs: cibler et tester les populations adolescentes

Claude Miller
University of Oklahoma

Michael Burgoon
Eusebio Alvaro
John R. Hall
Joseph Grandpre
Kathy Broneck
Cindy Frank
The University of Arizona

Electronic mail: Breaking down access barriers in chronic illness research/ Le courrier électronique: Contourner les obstacles qui gênent l'étude des maladies chroniques

Dorothy Morris
Deakin University

A modern meeting of the egg and the sperm: A neo-classical analysis of egg donation/surrogacy web sites/ Une réunion moderne du spermatozoïde et de l'ovule: Une analyse néo-classique du don de l'ovule et de la maternité de substitution sur le site w3

Makiko Ishikawa
California State University, Chico

Madeline M. Keaveney
California State University, Chico

A critical analysis of breast cancer sites: Searching the web for answers/ Une analyse critique des sites consacrés au cancer du sein: A la recherche de réponses dans le Web

Marilyn J. Matelski
Boston College

Assessing costs and outcomes of providing computer support to underserved women with breast cancer: A work in progress/ Evaluation des coûts et des résultats des prestations de services par ordinateur dont bénéficient les femmes défavorisées atteintes d'un cancer au sein: Une tâche en bonne voie

David H. Gustafson
University of Wisconsin - Madison

Karen E. Julesberg
University of Wisconsin Clinical Cancer Center

William A. Stengle
Barbara Ann Karmanos Cancer Center - Detroit

Fiona M. McTavish
Robert P. Hawkins
University of Wisconsin - Madison

Bridging the digital divide project: Providing access to cancer information through the Internet/ Projet d'étude pour atténuer le clivage social en informatique entre ceux qui ont accès aux ordinateurs et ceux qui en sont privés: Mise à la disposition des gens de renseignements sur le cancer par le biais d'Internet

Rosemarie Slevin Perocchia
Bruce Rapkin
Memorial Sloan-Kettering Cancer Center

Toward overcoming the digital divide for the dissemination of early detection cancer information/ Dans l'espoir dÆatténuer le clivage social en informatique entre ceux qui ont accès aux ordinateurs et ceux qui en sont privés dans la dissémination d'informations sur le dépistage précoce du cancer

Wayne A. Wilbright
Donna L. Williams
Jennifer Hayden
Ronald Horswell
Jill Hutchinson
Ray Whiting

Terry Davis
LSU Health Sciences Center

Doug Wagner
Cheri Tolle
Cancer Information Service of the Mid-South

Developing computer proficiency among Head Start parents: An in-progress case study
of a New England CIS digital divide project/ Acquisition d'une bonne connaissance des ordinateurs chez les parents au centre "Head Start"

Peter Salovey
Linda Z. Mowad
Judith Pizarro
Denielle Edlund
Yale University

Marta E. Moret
Urban Policy Strategies

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We express our sincere appreciation to the following individuals who served as reviewers for this issue:

Len Assante, Volunteer State College
Charles Atkin, Michigan State University
Cynthia Baur, Office of Disease Prevention and Health Promotion, DHHS
Melanie Booth-Butterfield, West Virginia University
Michael Booth-Butterfield, National Institute of Occupational Safety and Health, CDC
Dina Borzekowski, Johns Hopkins University
Dave Buller, Cooper Institute
Don Cegala, Ohio State University
Peter Clarke, University of Southern California
Becky Cline, University of Florida
Michael J. Cody, University of Southern California
Galen Cole, Centers for Disease Control and Prevention
Mary Jo Deering, Office of Disease Prevention and Health Promotion, DHHS
Peggy DeFleur, Boston University
Stephen Downs, NTIA, Department of Commerce
Susan Drucker, Hofstra University
Tim Edgar, Westat
Anthony Ferri, University of Nevada Las Vegas
Andy Finn, George Mason University
John Finnegan, University of Minnesota
Lyle Flint, Ball State University
Leigh Ford, Western Michigan University
Susan Fox, Magid Associates
Tom Gordon, Temple University
Kathryn Greene, Rutgers University
Susan Herndon, Ithaca College
Susan Hubbard, National Cancer Institute, NIH
Cynthia Irizarry, Stetson University
Linda Larkey, University of Arizona
Linda Lederman, Rutgers University
Gerald Ledlow, Central Michigan University
Greg Makoul, Northwestern University
Scott Moore, California State University, Fresno
Larry Mullen, University of Nevada Las Vegas
Janice Nall, National Cancer Institute, NIH
Dianne Needham, National Cancer Institute, NIH
H. Dan O'Hair, University of Oklahoma
Alex (Sandy) Pentland, MIT
Phyllis Piotrow, Johns Hopkins University
John Pollock, The College of New Jersey
Jim Query, Loyola University
Scott Ratzan, George Washington University
Julia Royall, National Library of Medecine, NIH
Charles Salmon, Michigan State University
Lisa Schwartz, Dartmouth University
Michael Slater, Colorado State University
Lea Stewart, Rutgers University
Teresa Thompson, University of Dayton
K. (Vish) Viswanath, National Cancer Institute, NIH
Steve Woloshin, Dartmouth University

The modern health care system is being revolutionized by the many new sources of health information in society. Information technology is providing health care providers and consumers with unparalleled opportunities for accessing, sharing, and processing relevant health information. Health information is essential in health care and health promotion because it provides both direction and rationale for guiding strategic health behaviors, treatments, and decisions. This special issue of The Elect ronic Journal of Communication/La Revue Electronique de Communication examines key issues, influences, and opportunities for using information technology as important information channels for health communication.

The first group of articles examine critical issues in developing dedicated on-line health information systems to meet the needs of intended users. In the introductory essay, "Usability's Helping Hand: Delivering Usable and Useful Online Health Information," Mathews and Hubbard frame a major issue in electronic health communication, designing health information delivered on-line to meet the unique needs and communication skills of intended audiences. They describe the powerful Usability.Gov website tha t helps web-designers refine web content and presentation based upon user feedback. Neuhauser, amplifies this need for user testing in her article, "Participatory design for better interactive health communication: A statewide model in the U.S.A.," describing how participatory design was used by hundreds of parents and people with disabilities to create a health Web site intended to benefit 33 million residents of the state of California. This provocative interactive design model could be widely adopted t o improve e-health applications. Hall and his colleagues build upon the first two  articles in their cautionary tale, "Challenges to Producing and Implementing the "Consider This" Web-based Smoking Prevention and Cessation Program" identifying key production and implementation challenges encountered in their development of this tobacco prevention and cessation program for public middle schools. Miller and his colleagues, build upon the article by Hall, presenting background research used to develop a nd refine the "Consider This" tobacco prevention and cessation program. They utilized principles of intrinsic motivation in appealing to adolescent populations to illustrate the advantages of interactive multimedia, both as an intervention mechanism and as a research tool.

The second group of articles report the results of three rich studies concerning the use of electronic communication to both gather and disseminate relevant health information. In "Electronic Mail: Breaking Down Access Barriers in Chronic Illness Research," Morris shares the results of an innovative study using electronic mail to collect narrative data from students suffering from Chronic Fatigue Syndrome (CFS). Electronic mail was found to be both an effective and cost-efficient method of data co llection with this hard to reach group of chronically ill study participants in their own homes, illustrating the power of this medium as a communication channel for individuals with debilitating illnesses and/or disabilities. In "A Modern Meeting of the Egg and the Sperm: A Neo-Classical Analysis of Egg Donation/Surrogacy Web Sites," Ishikawa and Keaveney examine three web sites developed for infertile couples in both Japan and the United States. They identify dramatic differences in both web content an d style on these sites that reflect unique differences in the ways the two cultures conceptualize and respond to infertility. In "A Content Analysis of Breast Cancer Awareness Programs: Searching the Web for Answers," Matelski reports an Aristotelian analysis of websites designed for breast cancer patients. Matelski identifies several critical issues concerning the accuracy  and usefulness of the information presented on these websites, suggesting criteria for judging the validity and reliability of cancer information on the web.

The final group of articles in the special issue are case-studies describing four innovative demonstration research projects being conducted in collaboration with the National Cancer Institute's Cancer Information Service (CIS) to identify effective new strategies for providing access to relevant cancer information to underserved populations. In "Assessing Costs and Outcomes of Providing Computer Support to Underserved Women With Breast Cancer: A Work in Progress," Gustafson and his colleagues repo rt a multi-year project testing the feasibility of using the CIS Network to disseminate an online cancer communication system (CHESS), that provides users with multiple information options (cancer information, reference materials, support groups, journaling, etc.) to underserved women recently diagnosed with breast cancer. The study compares adoption and use of the CHESS system by low-income women in rural Wisconsin and urban Detroit to better understand the unique information needs of different underserve d populations. In "Bridging the Digital Divide Project: Providing Access to Cancer Information Through the Internet," Perocchia and Rapkin report an innovative community partnership intervention program designed to teach both consumers and providers of health care in Harlem, New York, how to access relevant cancer information on the Internet. They conducted workshops delivered to target populations at a network of community organizations that served as both technology access sites and training centers. They also developed culturally-sensitive dedicated websites for providers and consumers to enhance the relevance and appropriateness of health information delivery. This demonstration project provides a model for how macro-social community interventions can be used to bridge the digital divide. Wilbright and his colleagues  describe a multidimensional strategy to overcome the digital divide for low literacy elderly nursing home residents in Louisiana in "Toward Overcoming the Digital Divide for the Dissemination of Early Detection Cancer Information." This project uses a train-the-trainer program, a computer education program, installation of computer and Internet resources in nursing homes, and an innovative narrative-based computerized multimedia information translation application for improving the dissemination of cancer information. This project illustrates strategies for reaching low-literacy audiences in nursing homes and clinics that has the potential for broad application. In "Developing Computer Proficiency Among Head Start Parents: A New England Region CIS Digital Divide Project," Salovey and his colleagues describe an important community intervention project that established community technology centers at two Head Start early childhood education programs to provide access to health information to low-income families. In this project, Head Start staff members were trained as technology coaches to deliver computer-training courses to parents and other community members who earned free, refurbished, Internet-ready computers to take home by completing the training program. This project provides a provocative model for using established community resources to educate underserved populations and bridge the digital divide in access to relevant health information. Each of these articles describe provocative new strategies for expanding and sustaining these unique digital divide interventions in other settings.

This special issue on "Health Communication and Information Technology" explores the ways that new media can expand access to health information, innovate health promotion and health care practices, and empower health care consumers and providers to use information to guide health preserving decisions and behaviors. There is much to learn about the ways information technologies can be best utilized in health  communication activities and these essays begin the process of addressing many of the key issues on this topic.

Gary L. Kreps
National Cancer Institute

Assistance utilisable: Procurer des renseignements m‚dicaux utiles et utilisables en ligne. Les auteurs de cet article affirment que les concepteurs de w3 ont recours à un mécanisme électronique de participation afin de mettre au point et de mettre à l'épreuve des sites de services médicaux et décrivent les moyens pour y parvenir.

Abstract. Health campaigns utilizing traditional media and information technologies are generally limited to accommodating only a broadly defined target population. While demanding little if any active participation from subjects, such media produce no more than passive learning at best. In contrast, multimedia systems are adept at encouraging the continual interaction and involvement of discretely addressed individual participants. Engaging a health message through active involvement with a complex multimedia program is intrinsically motivating for adolescents, promoting greater attitude accessibility, better comprehension, and enhanced internalization of information. At the same time, multimedia programs challenge participants to reframe problems, explore new behaviors, make decisions, increase feelings of effectance, and reduce uncertainty about behavior change.

Créer des messages de santé publique intrinséquement motivants avec des multimedias interactifs: cibler et tester les populations adolescentes. Les campagnes de santé publique utilisant les technologies traditionnelles de média et d'information ne sont généralement adaptées qu'à une population cible définie d'une manière très sommaire. Alors qu'ils ne requièrent que très peu, voire aucune participation de la part des sujets, de tels médias ne peuvent produire, au mieux, qu'un apprentissage de type passif. A l'inverse, les systèmes multimédia sont experts en l'art d'encourager l'interaction et l'engagement continus de participants par l'intermédiaire de messages s'adressant directement à eux. L'engagement des adolescents dans un dispositif promouvant des messages de santé publique par l'intermédiaire d'une participation active soutenue par à un programme multimédia complexe constitue une activité intrinséquement motivante. Par ailleurs, un tel dispositif promeut une plus grande accessibilité aux attitudes des adolescents, une meilleure compréhension de leur part ainsi qu'une meilleure internalisation de l'information. De plus, les programmes multimédia amènent les participants à recadrer les problèmes, à explorer de nouveaux comportements, à prendre des décisions, à augmenter leurs sentiments d'aptitude et à réduire leur incertitude quant a leur changement comportemental.

ELECTRONIC MAIL:
BREAKING DOWN ACCESS BARRIERS IN CHRONIC ILLNESS RESEARCH

Dorothy Morris
Deakin University

Abstract. Objective: The objective was to ascertain the lived experiences of tertiary students with ME/CFS in Australia thereby leading to greater understanding of their educational experiences within tertiary institutions. Secondly to assess their experiences for human rights and equity issues according to existing legislation.

Methods: Qualitative interpretive research methods of critical ethnographic case study and electronic mail (with some participants using ordinary mail), for the gathering of participant stories. The participant stories narratives were assessed from a Habermasian perspective of critical theoretical analysis for issues and themes. The initial questionnaire ascertained the status of the student and a later questionnaire asked the participants their opinions about the four themes. Students were not told that their stories would be assessed for human rights and equity. Results: The stories revealed the lived experience of ME/CFS tertiary students and the extent to which the symptomatology of ME/CFS placed limitations on their educational experiences. Four themes emerged: the illness experience, the lack of physical accommodation on campus, the political/medical construction of ME/CFS and the social and emotional experiences. There also emerged evidence of apparent breeches of human rights and equity, as defined by the Federal Disability Discrimination Act and Students with Disabilities: Code of Practice for Australian Tertiary Institutions, as well as infringements of quality of life expectations.

Discussion and conclusion: Electronic mail was effective in revealing the lived experiences of ME/CFS tertiary students in Australia and also in revealing equity and human rights issues. Electronic mail was a cost effective method of data collection which enabled the participants to write in their window of opportunity and countered the limitations of ME/CFS which other methods of data collection imposed. Electronic mail allowed access to this difficult-to-reach research cohort.

Le courrier électronique: Contourner les obstacles qui gênent l'étude des maladies chroniques. L''objet de cette étude est de bien saisir la nature des expériences vécues d'étudiants postscolaires atteints d'encéphalomyélite myalgique (EM) et de syndrome de fatique chronique (SFC) afin de mieux comprendre leurs expériences scolaires au sein d'institutions postscolaires. Cette étude vise également à établir si les droits civiques de ces étudiants ont été respectés en accord avec la législation actuelle en vigueur. On analyse les méthodes de recherche quantitative d'un cas d'étude éthnographique ainsi que le courrier électronique s'y afférent (certains participants s'en tiennent au courrier postal) dans le but de recueillir leurs souvenirs. On a eu recours à la méthode habernasienne pour faire une analyse critique des problèmes et des thèmes qui se dégagent des récits personnels des participants. Dans le premier questionnaire on a cherché à établir la situation de l'étudiant et dans le questionnaire suivant on lui a demadé son avis sur les quatre thèmes. On n'a pas dévoilé aux étudiants que leurs récits serviraient par la suite à évaluer le respect de leurs droits civiques. Ces récits ont révélé les expériences vécues d'étudiants postscolaires atteints d'EM et de SFC et les limites que la symptomologie des EM et des SFC imposait à la formation scolaire de ces étudiants. On a dégagé quatre thèmes: L'épreuve de la maladie, la carence en matière d'hébergement à la Cité universitaire, la structure médicale et politique entourant les EM et les SFC et les expériences personnelles éprouvées et ressenties. On a également cru déceler ce qui semble être des violations des droits de l'homme tels qu'ils ont été définis par la législation australienne régissant les droits des étudiants handicappés et des entorses faites au droit au bonheur. Grâce au courrier électronique, on a pu mettre au jour les expériences vécues d'étudiants postscolaires australiens atteints de ME et de SFC et déceler des problèmes de droits civiques. Le courrier électronique s'est avéré être une méthode de collecte de données rentable. Le courriel permet aux participants d'inscrire quand l'occasion se présente les possibilités qui leur sont offertes et de contrebalancer les limitations des EM et des SFC que d'autes méthodes de collecte imposaient. Le courriel a permis également d'accéder à ce groupe de recherche difficile à atteindre.

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