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The Office of the National Coordinator will be defining the architecture of the Nationwide Health Information Network (NWHIN) together with the proposed HealtheWay public/private partnership as a development and funding strategy. There are a number of open questions--for example, what is the best way to realize the benefits of health information exchange? How valuable are regional health information organizations in comparison with a more direct approach? What is the role of the carriers in delivering this service? The NWHIN is to exist for the public good, and thus shares many traits of the common law notion of 'common carriage' or 'public calling,' the modern term for which is network neutrality. Recent policy debates in Congress and resulting potential regulation have implications for key stakeholders within healthcare that use or provide services, and for those who exchange information. To date, there has been little policy debate or discussion about the implications of a neutral NWHIN. This paper frames the discussion for future policy debate in healthcare by providing a brief education and summary of the modern version of common carriage, of the key stakeholder positions in healthcare, and of the potential implications of the network neutrality debate within healthcare.

Objective: To evaluate the application of a chronic disease model (CDM) for prostate cancer to visual analog scale (VAS) and time trade-off (TTO) decision tools., Methods: A total of 138 men (mean age 58 years) viewed a CDM module for prostate cancer with and without prostate specific antigen (PSA) screening. Participants rated their hypothetical quality of life with potential prostate cancer treatment complications using a CDM-based VAS decision tool. They were then asked to estimate how many years they would be willing to trade to be free of treatment complications using a CDM-based TTO decision tool. The consistency between VAS and TTO scores and the relationship between scores and preferences for PSA screening test and hypothetical treatment choice for prostate cancer were then evaluated., Results: There was a significant relationship between the VAS and TTO ratings (regression P < 0.001). The TTO tool was sensitive to age. Mean scores with standard deviations for those less than 58 years compared to those 58 years and more were 7.78 (1.75) and 8.41 (1.52), respectively (P = 0.04). Using the VAS tool, men who chose PSA screening had higher quality of life ratings compared to men who did not choose PSA screening: 7.73 (1.78) and 6.59 (2.39), respectively (P = 0.01). Similar results were found with the TTO decision tool: 8.33 (1.45) and 7.04 (2.00), respectively (P = 0.005). Men who would hypothetically prefer treatment for moderately differentiated prostate cancer also had higher TTO scores compared to men who preferred watchful waiting: 8.54 (1.39) and 7.85 (1.73), respectively (P = 0.04)., Conclusion: CDM-based for prostate cancer, VAS and TTO ratings were consistent and were concordant with patient preferences for screening; TTO ratings were also concordant with treatment choice. The use of the CDM-based TTO ratings to adjust for quality of life in decision analytic modeling needs to be explored.

The Internet provides a medium to administer and evaluate evidence-based interventions for highly prevalent public health problems worldwide. The authors report a series of four Internet smoking cessation studies conducted in English and Spanish. These studies examined both outcome (self-reported 7-day abstinence) and mechanisms related to outcome (the impact of major depressive episodes [MDEs] on the likelihood of quitting). Over 4,000 smokers from 74 countries entered the studies. Studies 1 and 2 evaluated a standard smoking cessation guide (the "Guía"). Studies 3 and 4 were randomized trials comparing the Guía+ITEMs (individually timed educational messages) to the Guía+ITEMs+a mood management course. ITEMs were E-mails inviting participants back to the site at specific times. Online follow-up assessments resulted in completion rates of 44%-54% at 1 month and 26%-30% at 6 months in studies 1 and 2. Incentives and follow-up phone calls increased these rates to 70%, 66%, 65%, and 62% at 1, 3, 6, and 12 months in study 4. At 6 months, self-reported 7-day abstinence rates using missing = smoking data were 6% in studies 1 and 2, 10%-14% in study 3, and 20%-26% in study 4. The Guía+ITEMs condition tended to have higher quit rates, which reached significance at the 12-month follow-up in study 3 and at the 3-month follow-up in study 4. Smokers with past (but not current) MDEs tended to be the most likely to abstain and those with current MDEs the least likely. This trend reached significance in studies 1 and 4.

To support mobile computing systems for first responders at mass casualty sites, as part of the WIISARD (Wireless Internet Information System for Medical Response in Disasters) project, we have developed a data architecture to gracefully handle an environment with frequent network failure and, multiple writers that also supports rapid dissemination of updates that could be critical to the safety of responders. This is accomplished by allowing for a subset of the overall information available in a disaster scene to be cached locally on a responder's device and locally modified with or without network access. When the network is available, the local subset of the model is automatically synchronized with a server that contains the full model, and conflicts are resolved. When changes from a device are committed, the changes are instantly sent to any connected devices where the local subset would be modified by the changes.

To reverse the present stagnation in progress toward reduced smoking rates, new widely accessible treatment methods for smoking cessation must be developed and evaluated with large groups of smokers. We tested the feasibility of conducting a smoking cessation study over the Internet using a brief, self-help educational intervention. Through a direct e-mail sent from a large health information web site (WebMD), and with our presence on the Internet, we recruited 538 adult smokers to the study. Most participants (90.5%) completed all baseline questionnaires. Questionnaires showed acceptable to good reliability and were comparable with studies using paper-and-pencil methods. Participants appeared to be highly dependent on nicotine. Forty-two percent indicated being ready to quit smoking at baseline. At 1-month follow-up, 42.8% of baseline participants returned a complete follow-up questionnaire, 40% of whom indicated having made a serious quit attempt, and 8.3% of whom indicated 7-day abstinence. Most follow-up participants rated the site as at least somewhat helpful to quitting (74.9%) and reported at least a slight increased intention to quit smoking over baseline (67.3%). While Internet-enabled self-help interventions for smoking cessation are able to reach large numbers of smokers interested in quitting smoking, additional procedures are needed to retain these users for treatment and follow-up assessments.

Objective: The aim of this study was to determine whether an automated e-mail messaging system that sent individually timed educational messages (ITEMs) increased the effectiveness of an Internet smoking cessation intervention., Design: Using two consecutive series of participants, the authors compared two Web-based self-help style smoking cessation interventions: a single-point-in-time educational intervention and an enhanced intervention that also sent ITEMs timed to participants' quit efforts. Outcomes were compared in 199 participants receiving the one-time intervention and 286 receiving ITEMs., Measurements: Demographic factors, number of cigarettes smoked, nicotine addiction, depressive symptoms, and confidence in ability to quit were measured at entry. Twenty-four-hour quit attempts and seven-day point-prevalence of abstinence (nonrespondents assumed to smoke) were measured 30 days after each subject's self-selected quit date., Results: The one-time and ITEMs groups differed in some demographics and some relapse risk factors but not in factors associated with 30-day quit rates. ITEMs appeared to increase the rate at which individuals set quit dates (97% vs. 91%, p = 0.005) and, among the respondents to follow-up questionnaires (n = 145), the rate of reported 24-hour quit efforts (83% vs. 54%, p = 0.001). The 30-day intent-to-treat quit rates were higher in the ITEMs group: 7.5% vs. 13.6%, p = 0.035. In multivariate analyses controlling for differences between groups, receiving ITEMs was associated with an increase in the odds ratio for quitting of 2.6 (95% confidence interval = 1.3-5.3)., Conclusion: ITEMs sent on strategic days in smokers' quit efforts enhanced early success with smoking cessation relative to a single-point-in-time Web intervention. The effect appears to be mediated by ITEMs' causing smokers to plan and undertake quit efforts more frequently.

Objective: To describe a Web-based computer health assessment survey for patients with rheumatoid arthritis (RA) and to evaluate the survey in comparison with current paper versions., Methods: Utilizing data from a study on RA, we compared results from 43 patients attending a university-based clinic who were each given a paper and a demonstration computer version of a patient self-assessment questionnaire including multiple-choice questions from a multi-dimensional Health Assessment Questionnaire (HAQ); visual analog scales (VAS) for pain, fatigue, and global disease severity; and a tender and swollen joint count reporting tool. Patients were given optional followup surveys to determine their opinion of the computer program., Results: High correlations (intraclass correlation coefficient > 0.9) were seen across methods for the 10-item HAQ and psychological distress scores and the VAS scores for pain and global disease severity. Moderate correlation was observed for the self-efficacy scores, the VAS scores for fatigue, and tender joint counts. The data also revealed a small shift in the mean scores for the HAQ and self-efficacy questions, with patients reporting slightly higher scores on the computer instrument. Overall, patient opinions of the uniquely designed joint count tool were good, with 71% of responding patients answering favorably., Conclusion: Web-based computer versions of patient self-assessment surveys in RA are comparable to paper versions, and their use in clinics or over the Internet could dramatically facilitate the ability of physicians to monitor patients' health.

Relatively little is known about how to use the Internet to promote health behavioral change. This article describes a multiple-contact Internet smoking cessation program with an 8-week web-based course, online tools for self-monitoring of behaviors, and computer-tailored e-mail messages timed to enrollees' quit efforts. In a pilot study in 49 smokers, we found that enrollees returned to the website a median of 2 times and completed an average of 2 of 8 educational modules. In follow-up, respondents (n = 26) rated e-mail and web components of the intervention as equally valuable (5.9 vs. 5.5 of 10, p = 0.44). While site had potentially important effects on smoking behaviors (34% of enrollees either quit smoking or had a 50% reduction in cigarette use), we were not able hold the interest of the majority of enrollees over the intervention period. Problems with the design of the site are discussed.

The Internet is a rich multimodal communication environment where researchers can often recruit large numbers of participants for survey studies at low cost; however, there are many unanswered questions about the use of this technology in medical research. An important question is whether the results obtained in such surveys are generalizable to other populations. In this article, we describe different approaches for recruitment of participants on the Internet and how specific approaches may limit generalizability. Another issue clouding use of the Web in research is the essential anonymity of participants. We discuss the risk and benefits of anonymous surveys and technical methods that minimize the risks while preserving anonymity and confidentiality. A related problem may be accidental or deliberate enrollment of unqualified individuals in studies. Researchers can use survey design and statistical methods described herein to partially address threats to validity arising from such individuals; however, in some situations, confirmation of eligibility, by manual review of medical records, may be necessary.

Objective: While it is technically feasible to conduct migraine research on the Internet, can one be sure that the subjects who participate actually have the disorder? We examined this issue in 109 sequential subjects in an Internet study of migraineurs' symptoms., Background: The increasing use of the Internet by the US population provides an opportunity for using this medium in clinical research, but, to be useful, the results of such research must be valid and generalizable., Methods: Using postings to Internet newsgroups of migraineurs, we recruited subjects to a migraine research site. We examined reported symptoms by comparing them with the International Headache Society's criteria for diagnosis of migraine and by subjective review by a neurologist. We also attempted to contact the subject's primary care physicians to confirm their diagnosis., Results: We found considerable evidence for the validity of the participants' self-reported diagnoses. Most subjects with professed migraine reported quality of pain (97%) and associated symptoms (92%) consistent with that diagnosis, and review of their symptoms and questionnaire responses by the neurologist suggested that almost all subjects (97%) had migraine. Personal physicians confirmed a diagnosis of migraine in 90% of consenting subjects (n=49)., Conclusions: The validity of self-reported diagnosis of migraine does not appear to be an obstacle to conducting research in subject populations on the Internet.

One of the most difficult tasks in cost-effectiveness analysis is the measurement of quality weights (utilities) for health states. The task is difficult because subjects often lack familiarity with health states they are asked to rate and because utilities measures such as the standard gamble, ask subjects to perform tasks that are complex and far from everyday experience. A large body of research suggests that computer methods can play an important role in explaining health states and measuring utilities. However, administering computer surveys to a "general public" sample, the most relevant sample for cost-effectiveness analysis, is logistically difficult. In this paper, we describe a software system designed to allow the study of general population preferences in a volunteer Internet survey panel. The approach, which relied on over sampling of ethnic groups and older members of the panel, produced a data set with an ethnically, chronologically and geographically diverse group of respondents, but was not successful in replicating the joint distribution of demographic patterns in the population.

Background: Schizophrenia is a common severe syndrome with a highly variable pattern of symptoms. The medications used to treat this disorder are expensive and may cause severe adverse effects. Little is known about how the public perceives health outcomes in schizophrenia or the potential adverse effects of antipsychotic medication. This complicates the use of standard cost-effectiveness analysis to set priorities for health resource allocation.Objective: In this study, we measured utility weights for a set of health states derived from Positive and Negative Symptom Scale (PANSS) scores, and a set of health states that included the presence of common adverse effects of medication, thus creating utility mapping function for clinical data.Methods: We presented a convenience sample of members of a large commercial Internet survey panel with digital video materials portraying eight different patterns of schizophrenia with varying levels of positive, negative and cognitive symptoms, and five common adverse effects of antipsychotic medications. We then elicited their standard gamble (SG) and visual analog scale (VAS) ratings using iMPACT3 computer program, with an automated error repair feature, deliberately over-sampling minority ethnic groups in the panel. We censored subjects with uncorrected errors in ratings and estimated utilities for each state by re-weighting responses to match United States population demographics.Subjects: 620 well-educated, ethnically diverse volunteers (54% Caucasian), who spanned a broad range of age groups and geographical regions of the US participated in this study.Results: Because of evidence of bias in ratings, 175 (29%) subjects with internal inconsistencies in ratings were censored from estimates of mean population utilities. In the remaining 441 subjects, SG utilities, re-weighted to match US population demographic profiles, ranged from 0.88 for mild schizophrenia to 0.47 extremely severe schizophrenia. Variability in the types of symptoms exhibited (positive, negative or cognitive) was less important to participants than the overall severity of each state. Modest reductions in symptoms (for example, from severe to moderate or moderate to mild) were associated with relatively large changes in utility (0.12-0.19). Adverse effects decreased utilities for states by amounts ranging from 0.09 (pseudo-parkinsonism) to 0.05 (obesity).Conclusions: The public views schizophrenia is a very disabling syndrome and treatments that reduce symptoms produce important gains in utility, even if they do not induce a complete remission. Adverse effects significantly reduce utilities for states; therefore, cost-effectiveness analyses for this disorder should take adverse effects of treatment into consideration. [ABSTRACT FROM AUTHOR]

Objectives: The Internet may provide a cost-effective means to collect outcomes data needed to improve the quality and efficiency of medical care. We explored the feasibility and methodology of a longitudinal outcomes study of Internet users who have ulcerative colitis (UC). Methods: We created an open-enrollment electronic survey of Internet users who have UC and recorded the number of respondents, their demographics, and their willingness to participate. Results: In a 2-month period, 582 users browsed the survey, 172 (30%) completed the questionnaire, and 162 (95%) reported willingness to enroll this study. Eighty-three percent were willing to release their medical records to verify their diagnosis. Most (gt;70%) had the same E-mail address over 2 yr. suggesting that long-term follow-up could he performed electronically. In comparison with the male predominance of Internet users, respondents had gender distribution similar to that of patients who have UC. In comparison with the general population, respondents have higher education and higher household income. Conclusions: The Internet community could serve as a resource for general population outcome studies. Selection bias due to limited availability and use of the networked computers may affect results. The Internet community, however, is expanding rapidly, so it should become more representative of the general population. [ABSTRACT FROM AUTHOR]