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e-health networks and social transformations 303apply cultural or generational norms and customs (Burhansstipanov et al.,2001; Hanson et al., 2002). Empathy is stronger in online support and patientgroups, especially in moderated ones, than in other kinds of discussion groups(Preece and Ghozati, 2001). As many online support groups are peer-moderatedrather than professionally moderated, Till (2003) suggests that veteranmembers or survivors often function as tacit but highly effective peer navigators.Partially because of the lack of moderation by medical experts, however,Culver et al. (1997: 471) concluded that online support groups are a mixtureof “snake oil” and “self-help,” preventing appropriate diagnosis and treatment(see Rice, 2001).Aspden and Katz (2001) note that 73 percent of health seekers discuss theirInternet information with others. For example, online users report medicaldata from the Journal of the American Medical Association and Medline toeach other as persuasive techniques in support groups (Wikgren, 2001).Paterniti et al. (1999) evaluated postings on breast cancer-focused computerbulletin board systems, and found that participants discussed strategies forhealth seeking and worked together to make decisions on clinical recommendationsand treatment options. Sharf (1997) studied an online breast-cancerdiscussion group and concluded that it was a powerful force in informationexchange, social support, and personal empowerment.While support groups appear to heal the soul and feed the mind, there issome evidence about the crucial question of whether they help to heal the bodyas well. While, at most, only 9 percent of health seekers have participated inan online support group of any sort, those that have do report notable benefits(Celio et al., 2000; McKay et al., 2001; Pew, 2002). These benefits mayinclude reductions in depression, cancer-related trauma, and perceived stress;these were the benefits that accrued among 72 women with primary breastcarcinoma participating in a 12-week web-based support group (Winzelberg etal., 2003). McKay et al. (2001) found that patients taking part in an onlinediabetes education and support group saw their blood glucose levels loweredmore than those in the control group. Likewise, in a randomized controlledtrial, participants in a back pain e-mail discussion group noted significantimprovements in pain, disability, role function, and health distress, comparedto a control group (Lorig et al., 2002). In a controlled experiment comparingInternet and classroom-delivered psychoeducational interventions for eatingdisorders, Celio et al. (2000) found that measures of body image and eatingdisorders were significantly reduced in the Internet group in comparison to theclassroom group. These studies suggest that the Internet is not only an equalto face-to-face support groups, but may produce beneficial and unique results.Overall, online support groups had some benefits not found in face-to-facerelations, including seeming anonymity, which moderated inhibitions towarddiscussing sensitive topics, and around-the-clock access (Rice, 2001).
304 James E. Katz, Ronald E. Rice, and Sophia K. AcordTaking Care of One’s Own CareWhereas centralized top-down Internet based initiatives have not delivered aspromised, localized applications have indeed produced successful results. TheInternet can be used not only to find new health information, but also todisseminate health knowledge to monitor conditions. Using the InteractiveMultimedia Program for Asthma Control and Tracking, patients saw theirasthma symptom days decrease from 81 to 51 a year, and their emergencyroom visits decrease from an annual mean of 1.93 to 0.62 (Krishna et al.,2003).In another example, patients with access to their medical records primarilyused the system to review their laboratory results, resulting in enhanced understandingon the part of the patients and improved communication with theirphysicians (Cimino et al., 2001). These expert-run cases of health seeking onthe Internet seem successful because they are based on the self-service andconvenience aspects that empower patients (93 percent of health seekers valueconvenience according to the Pew 2000 survey), while providing quality information.(There are also manifold reports of abuse and exploitation via thesetechnologies as well, however.)Thus, users are accessing the Internet not only to obtain health informationthat they could not otherwise easily obtain, but also to create contexts forsocial interaction, empathy, and emotional support. As with other human activities,this self-organization has both benefits and disadvantages. Among thedisadvantages is the tremendous amount of mis-information, disinformation,and duplicity that is propagated by these unregulated forums. However, due totheir many advantages, it remains likely that online interfaces between thecentralized and decentralized, such as between physicians and patients, couldpossibly become valuable sites for transforming social relations in the pursuitof health.THEME 3: EXPECTING/RESISTING TRANSFORMATIONSOF PHYSICIAN/PATIENT RELATIONSHIPSAs part of the widening use of the Internet for obtaining information, and, aswe noted above, communicating with other patients and supporters, patientsare also pushing for online communication with their physicians. Some 90percent of Americans would like to be able to contact their physician online orby e-mail, and 40 percent of respondents would be willing to pay for thisservice (CyberAtlas, 2002). Indeed, 26 percent of medical practices wereengaging in online communication with patients in 2001, with another 13percent planning to start in the following 18 months (Harris Interactive, 2001).
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304 James E. Katz, Ronald E. Rice, and Sophia K. AcordTaking Care of One’s Own CareWhereas centralized top-down Internet based initiatives have not delivered aspromised, localized applications have indeed produced successful results. TheInternet can be used not only to find new health information, but also todisseminate health knowled<strong>ge</strong> to monitor conditions. Using the InteractiveMultimedia Program for Asthma Control and Tracking, patients saw theirasthma symptom days decrease from 81 to 51 a year, and their emer<strong>ge</strong>ncyroom visits decrease from an annual mean of 1.93 to 0.62 (Krishna et al.,2003).In another example, patients with access to their medical records primarilyused the system to review their laboratory results, resulting in enhanced understandingon the part of the patients and improved communication with theirphysicians (Cimino et al., 2001). These expert-run cases of health seeking onthe Internet seem successful because they are based on the self-service andconvenience aspects that empower patients (93 percent of health seekers valueconvenience according to the Pew 2000 survey), while providing quality information.(There are also manifold reports of abuse and exploitation via thesetechnologies as well, however.)Thus, users are accessing the Internet not only to obtain health informationthat they could not otherwise easily obtain, but also to create contexts forsocial interaction, empathy, and emotional support. As with other human activities,this self-organization has both benefits and disadvanta<strong>ge</strong>s. Among thedisadvanta<strong>ge</strong>s is the tremendous amount of mis-information, disinformation,and duplicity that is propagated by these unregulated forums. However, due totheir many advanta<strong>ge</strong>s, it remains likely that online interfaces between thecentralized and decentralized, such as between physicians and patients, couldpossibly become valuable sites for transforming social relations in the pursuitof health.THEME 3: EXPECTING/RESISTING TRANSFORMATIONSOF PHYSICIAN/PATIENT RELATIONSHIPSAs part of the widening use of the Internet for obtaining information, and, aswe noted above, communicating with other patients and supporters, patientsare also pushing for online communication with their physicians. Some 90percent of Americans would like to be able to contact their physician online orby e-mail, and 40 percent of respondents would be willing to pay for thisservice (CyberAtlas, 2002). Indeed, 26 percent of medical practices wereengaging in online communication with patients in 2001, with another 13percent planning to start in the following 18 months (Harris Interactive, 2001).
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