BackgroundSelf-management support can improve health and reduce health care utilization by people with long-term conditions. Online communities for people with long-term conditions have the potential to influence health, usage of health care resources, and facilitate illness self-management. Only recently, however, has evidence been reported on how such communities function and evolve, and how they support self-management of long-term conditions in practice.ObjectiveThe aim of this study is to gain a better understanding of the mechanisms underlying online self-management support systems by analyzing the structure and dynamics of the networks connecting users who write posts over time.MethodsWe conducted a longitudinal network analysis of anonymized data from 2 patients’ online communities from the United Kingdom: the Asthma UK and the British Lung Foundation (BLF) communities in 2006-2016 and 2012-2016, respectively.ResultsThe number of users and activity grew steadily over time, reaching 3345 users and 32,780 posts in the Asthma UK community, and 19,837 users and 875,151 posts in the BLF community. People who wrote posts in the Asthma UK forum tended to write at an interval of 1-20 days and six months, while those in the BLF community wrote at an interval of two days. In both communities, most pairs of users could reach one another either directly or indirectly through other users. Those who wrote a disproportionally large number of posts (the superusers) represented 1% of the overall population of both Asthma UK and BLF communities and accounted for 32% and 49% of the posts, respectively. Sensitivity analysis showed that the removal of superusers would cause the communities to collapse. Thus, interactions were held together by very few superusers, who posted frequently and regularly, 65% of them at least every 1.7 days in the BLF community and 70% every 3.1 days in the Asthma UK community. Their posting activity indirectly facilitated tie formation between other users. Superusers were a constantly available resource, with a mean of 80 and 20 superusers active at any one time in the BLF and Asthma UK communities, respectively. Over time, the more active users became, the more likely they were to reply to other users’ posts rather than to write new ones, shifting from a help-seeking to a help-giving role. This might suggest that superusers were more likely to provide than to seek advice.ConclusionsIn this study, we uncover key structural properties related to the way users interact and sustain online health communities. Superusers’ engagement plays a fundamental sustaining role and deserves research attention. Further studies are needed to explore network determinants of the effectiveness of online engagement concerning health-related outcomes. In resource-constrained health care systems, scaling up online communities may offer a potentially accessible, wide-reaching and cost-effective intervention facilitating greater levels of self-management.

Background Participation in online health communities (OHCs) is a popular trend in the United Kingdom. However, so far, no evidence exists to indicate an association between participation in OHCs and improved health outcomes. Objective This study aimed to (1) determine changes in patient activation over 3 months in new users of an OHC, (2) describe patterns of engagement with an OHC, (3) examine whether patients’ characteristics at baseline were associated with subsequent patterns of engagement, and (4) determine if patterns of engagement during the 3 months were associated with changes in patient activation, health care utilization, and health status. Methods Active new OHC users on HealthUnlocked (HU) were surveyed to measure demographics, levels of patient activation (describing a person’s confidence in managing their own health; scale 0-100 with 4 categories), health care utilization, and health status using a Web-based survey at baseline and 3 months. Patient activation at baseline and 3 months was compared (aim 1). Alongside, for a sample of HU users and survey responders, daily OHC website usage data were automatically captured. This was used to identify clusters of engagement with HU (aim 2). For survey responders, baseline characteristics, patient activation, health care utilization, and health status were compared at baseline and 3 months, overall, and between engagement clusters using t tests and chi-square tests (aims 3 and 4). Results In 329 people who completed both surveys, baseline activation was most frequently level 3, described as taking action but still lacking confidence. At follow-up, a change of 2.6 points was seen, with the greatest change seen in those at lowest baseline activation levels. In addition, 4 clusters of engagement were identified: low, medium, high, and very high, who were active on HU for a mean of 4, 12, 29, and 59 days, respectively. Survey responders were more commonly high or very high engagers. Baseline activation was highest in low and very high engagers. Overall activation increased over time in all engagement groups. Very high engagers had the greatest improvement in activation (5 points), although the average change was not above what is considered clinically meaningful for any group. Fewer accident and emergency visits were seen at follow-up in those with higher engagement, although this trend was not seen for other health care utilization measures. There was no change in health status at 3 months. Conclusions This observational study provides some insight into how patterns of engagement with OHCs are associated with changes in patient activation, health care utilization, and health status. Over 3 months, overall, the change in activation was not clinically significant, and there were some indications that OHCs may be of benefit to particular groups. However, the study limitations prevent firm conclusions about causal relationships.

To date, social media has been used predominantly by the pharmaceutical industry to market products and to gather feedback and comments on products from consumers, a process termed social listening. However, social media has only been used cautiously in the drug development cycle, mainly because of regulations, restrictions on engagement with patients, or a lack of guidelines for social media use from regulatory bodies. Despite this cautious approach, there is a clear drive, from both the industry and consumers, for increased patient participation in various stages of the drug development process. The authors use the example of HealthUnlocked, one of the world's largest health networks, to illustrate the potential applications of online health communities as a means of increasing patient involvement at various stages of the drug development process. Having identified the willingness of the user population to be involved in research, numerous ways to engage users on the platform have been identified and explored. This commentary describes some of these approaches and reports how online health networks that encourage people to share their experiences in managing their health can, in turn, enable rapid patient engagement for clinical research within the constraints of industry regulation.

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Objective This paper presents the development process of GreyMatters, a memory clinic system, outlining the conceptual, practical, technical, and ethical aspects, and focuses on the usability evaluation of the system. There was a need for a system to be developed for the memory clinics of Berkshire Healthcare National Health Service (NHS) Foundation Trust (BHFT) to aid the clinical and administrative processes of assessing, diagnosing, managing, and treating patients with cognitive disorders and mental health problems. Methods The methodology for development of the information system involved phases of requirements gathering, modeling, and prototype creation, and “bench testing” the prototype with experts. The standard Institute of Electrical and Electronics Engineers (IEEE) recommended approach for the specifications of software requirements was adopted. An electronic health record (EHR) standard (EN13606) was used, and clinical modeling was done through archetypes and the project complied with data protection and privacy legislation. Usability evaluation of GreyMatters was done using the IBM questionnaires. Results Though the initial development was complex, the requirements, methodology, and standards adopted made the construction, deployment, adoption, and population of a memory clinic and research database feasible. The electronic patient data including the assessment scales and scores provide a rich source of objective data for audits and research. In the usability evaluation of GreyMatters, overall responses to the Computer System Usability Questionnaire and After-Scenario Questionnaire demonstrated mild-to-moderate satisfaction with the overall system and with individual tasks. The results support that the system is an acceptable tool for clinical, administrative, business, and research use and forms a useful part of the wider information architecture. The implementation and sustainability issues and the lessons learnt were noted. Discussion The development of a system needs to take into account the existing data collection methods and other information systems that will be used alongside. Use of graphical development tools to communicate requirements, build interfaces, and prototype may improve the quality and efficiency of system development. Standardized data collection assists in the provision of reports for clinical, audit, and service development use to meet the requirements of commissioners and to allow the easier identification of potential research participants. It is possible that in the usability evaluation, the satisfaction scores are overall lower due to the extra complication of using this system in addition to the Trust's main EHR. The small number of users is a limitation. Conclusion The establishment of requirements and methodology, addressing issues of data security and confidentiality, future data compatibility, and interoperability and medicolegal aspects, such as access controls and audit trails, led to a robust and useful system. The system was modeled around health record standards that are based on long established research on EHR standards and archetypes which differentiates GreyMatters from simple web-based capture forms that were built in house by the Trust. Its strength is that it provides flexibility to record clinical information that the existing Trust systems can't. The evaluation supports that the system is an acceptable tool for clinical, administrative, and research use. Some aspects of the system like prescribing module do need further work.