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BACKGROUND: The use of online resources has changed how people manage health care processes. Patients seek information about health conditions, guidance in treatment, and support from peers online, complementary to traditional health care trajectories. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; however, there is a gap in research regarding in what way online communities contribute to patient empowerment. OBJECTIVE: We synthesized research regarding how online communities contribute to patient empowerment to address the research question "In what ways can participation in online communities support patient empowerment?" by studying how patient empowerment is operationalized in different studies. The definition of patient empowerment used in this paper is enablement for people to develop mastery over actions and control over decisions that influence their lives. The mastery is both through processes and outcomes of the development. METHODS: A systematic review was conducted by searching in the following databases: Scopus, ACM Digital Library, EBSCO (CINAHL and MEDLINE), PubMed, and Web of Science. In total, there were 1187 papers after excluding duplicates, and through selection processes using an analytical framework with definitions of patient empowerment and related concepts, 33 peer-reviewed papers were included. RESULTS: Findings indicated that online communities support patient empowerment both as a process and as outcomes of these processes. Additionally, it was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients' usage. There was a mix between deductive (19/33, 58%), inductive (11/33, 33%), and a mixed approach (3/33, 9%) of studying patient empowerment in various forms. The online communities in most papers (21/33, 64%) were well-established and represented patients' initiatives. CONCLUSIONS: There is a need to include professionals' perspectives regarding how health care can embrace patient empowerment through online communities. This systematic review's main contribution is the proposal of a new framework and conceptualization of how patient empowerment in online communities can be understood from different hierarchical levels. CC BY 4.0Funding was provided by the Swedish Cancer Society (Senior Clinical Investigator Award; CAN 2016/509), the Swedish ResearchCouncil (2017-01103), the agreement concerning research and education of doctors (ALFGBG-716581) and the Region VästraGötaland Healthcare Committee (Hälso- och sjukvårdsstyrelsen; VGFOUREG-855181 and 931677).

Background The use of online resources has changed how people manage health care processes. Patients seek information about health conditions, guidance in treatment, and support from peers online, complementary to traditional health care trajectories. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; however, there is a gap in research regarding in what way online communities contribute to patient empowerment. Objective We synthesized research regarding how online communities contribute to patient empowerment to address the research question “In what ways can participation in online communities support patient empowerment?” by studying how patient empowerment is operationalized in different studies. The definition of patient empowerment used in this paper is enablement for people to develop mastery over actions and control over decisions that influence their lives. The mastery is both through processes and outcomes of the development. Methods A systematic review was conducted by searching in the following databases: Scopus, ACM Digital Library, EBSCO (CINAHL and MEDLINE), PubMed, and Web of Science. In total, there were 1187 papers after excluding duplicates, and through selection processes using an analytical framework with definitions of patient empowerment and related concepts, 33 peer-reviewed papers were included. Results Findings indicated that online communities support patient empowerment both as a process and as outcomes of these processes. Additionally, it was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients’ usage. There was a mix between deductive (19/33, 58%), inductive (11/33, 33%), and a mixed approach (3/33, 9%) of studying patient empowerment in various forms. The online communities in most papers (21/33, 64%) were well-established and represented patients’ initiatives. Conclusions There is a need to include professionals' perspectives regarding how health care can embrace patient empowerment through online communities. This systematic review's main contribution is the proposal of a new framework and conceptualization of how patient empowerment in online communities can be understood from different hierarchical levels.

Background There is a lack of research on the effectiveness of online peer support groups for reducing social isolation and depressive symptoms among caregivers, and previous research has mixed results. Objective This study aimed to test whether military caregivers who joined a new online peer support community or engaged with an existing online community experienced decreased perceived social isolation and improved depressive symptoms over 6 months. Methods We conducted a longitudinal study of 212 military caregivers who had newly joined an online community and those who were members of other military caregiver groups. Multiple indicators of perceived social isolation and depressive symptoms were assessed at baseline and at 3 and 6 months. Results Compared with caregivers in the comparison group, caregivers who joined the new group experienced less perceived social isolation at 3 months (eg, number of caregivers in social network [unstandardized regression coefficients] b=0.49, SE 0.19, 95% CI 0.87 to 0.02), but this effect did not persist at 6 months. Those who engaged more with new or existing groups experienced less perceived social isolation over time (eg, number of caregivers in social network b=0.18, SE 0.06, 95% CI 0.02 to 0.27), and this relationship was mediated by increased interactions with other military caregivers (95% CI 0.0046 to 0.0961). Engagement with an online group was not associated with improvements in depressive symptoms. Conclusions Online communities might help reduce social isolation when members engage with the group, but more intensive treatment is needed to improve depressive symptoms.

Background Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied. Objective This study aimed to better understand the barriers and facilitators of raising a child with T1D and ASD. Secondary analysis of web-based content (phase 1) and telephone interviews (phase 2) were conducted to further expand the existing knowledge on the challenges and successes faced by these families. Methods Phase 1 involved a qualitative analysis of publicly available online forums and blog posts by caregivers of children with both T1D and ASD. Themes from phase 1 were used to create an interview guide for further in-depth exploration via interviews. In phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and through the web from social media posts to T1D-focused groups and sites. Interested respondents were directed to a secure web-based eligibility assessment. Information related to T1D and ASD diagnosis, contact information, and demographics were collected. On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child’s most recent hemoglobin A1c (HbA1c) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D. Results For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA1c levels for children with T1D and ASD were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting. Conclusions Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community.

With the expansion and popularity of research on websites such as Facebook and Twitter, there has been increasing concern about investigator conduct and social media ethics. The availability of large data sets has attracted researchers who are not traditionally associated with health data and its associated ethical considerations, such as computer and data scientists. Reliance on oversight by ethics review boards is inadequate and, due to the public availability of social media data, there is often confusion between public and private spaces. In addition, social media participants and researchers may pay little attention to traditional terms of use. In this paper, we review four cases involving ethical and terms-of-use violations by researchers seeking to conduct social media studies in an online patient research network. These violations involved unauthorized scraping of social media data, entry of false information, misrepresentation of researcher identities of participants on forums, lack of ethical approval and informed consent, use of member quotations, and presentation of findings at conferences and in journals without verifying accurate potential biases and limitations of the data. The correction of these ethical lapses often involves much effort in detecting and responding to violators, addressing these lapses with members of an online community, and correcting inaccuracies in the literature (including retraction of publications and conference presentations). Despite these corrective actions, we do not regard these episodes solely as violations. Instead, they represent broader ethical issues that may arise from potential sources of confusion, misinformation, inadequacies in applying traditional informed consent procedures to social media research, and differences in ethics training and scientific methodology across research disciplines. Social media research stakeholders need to assure participants that their studies will not compromise anonymity or lead to harmful outcomes while preserving the societal value of their health-related studies. Based on our experience and published recommendations by social media researchers, we offer potential directions for future prevention-oriented measures that can be applied by data producers, computer/data scientists, institutional review boards, research ethics committees, and publishers.

Background Superusers, defined as the 1% of users who write a large number of posts, play critical roles in online health communities (OHCs), catalyzing engagement and influencing other users’ self-care. Their unique online behavior is key to sustaining activity in OHCs and making them flourish. Our previous work showed the presence of 20 to 30 superusers active on a weekly basis among 3345 users in the nationwide Asthma UK OHC and that the community would disintegrate if superusers were removed. Recruiting these highly skilled individuals for research purposes can be challenging, and little is known about superusers. Objective This study aimed to explore superusers’ motivation to actively engage in OHCs, the difficulties they may face, and their interactions with health care professionals (HCPs). Methods An asynchronous web-based structured interview study was conducted. Superusers of the Asthma UK OHC and Facebook groups were recruited through Asthma UK staff to pilot and subsequently complete the questionnaire. Open-ended questions were analyzed using content analysis. Results There were 17 superusers recruited for the study (14 patients with asthma and 3 carers); the majority were female (15/17). The age range of participants was 18 to 75 years. They were active in OHCs for 1 to 6 years and spent between 1 and 20 hours per week reading and 1 and 3 hours per week writing posts. Superusers’ participation in OHCs was prompted by curiosity about asthma and its medical treatment and by the availability of spare time when they were off work due to asthma exacerbations or retired. Their engagement increased over time as participants furthered their familiarity with the OHCs and their knowledge of asthma and its self-management. Financial or social recognition of the superuser role was not important; their reward came from helping and interacting with others. According to the replies provided, they showed careful judgment to distinguish what can be dealt with through peer advice and what needs input from HCPs. Difficulties were encountered when dealing with misunderstandings about asthma and its treatment, patients not seeking advice from HCPs when needed, and miracle cures or dangerous ideas. Out of 17 participants, only 3 stated that their HCPs were aware of their engagement with OHCs. All superusers thought that HCPs should direct patients to OHCs, provided they are trusted and moderated. In addition, 9 users felt that HCPs themselves should take part in OHCs. Conclusions Superusers from a UK-wide online community are highly motivated, altruistic, and mostly female individuals who exhibit judgment about the complexity of coping with asthma and the limits of their advice. Engagement with OHCs satisfies their psychosocial needs. Future research should explore how to address their unmet needs, their interactions with HCPs, and the potential integration of OHCs in traditional healthcare.

Background Maintaining a healthy weight can reduce the risk of developing many diseases, including type 2 diabetes, hypertension, and certain types of cancers. Online social media platforms are popular among people seeking social support regarding weight loss and sharing their weight loss experiences, which provides opportunities for learning about weight loss behaviors. Objective This study aimed to investigate the extent to which the content posted by users in the r/loseit subreddit, an online community for discussing weight loss, and online interactions were associated with their weight loss in terms of the number of replies and votes that these users received. Methods All posts that were published before January 2018 in r/loseit were collected. We focused on users who revealed their start weight, current weight, and goal weight and were active in this online community for at least 30 days. A topic modeling technique and a hierarchical clustering algorithm were used to obtain both global topics and local word semantic clusters. Finally, we used a regression model to learn the association between weight loss and topics, word semantic clusters, and online interactions. Results Our data comprised 477,904 posts that were published by 7660 users within a span of 7 years. We identified 25 topics, including food and drinks, calories, exercises, family members and friends, and communication. Our results showed that the start weight (β=.823; P Conclusions Our study showed that both online interactions and offline activities were associated with weight loss, suggesting that future interventions based on existing online platforms should focus on both aspects. Our findings suggest that online personal health data can be used to learn about health-related behaviors effectively.

Background: The term gestational trophoblastic disease (GTD) includes both complete and partial moles, which are uncommon nonviable pregnancies with the potential to evolve into a malignancy known as gestational trophoblastic neoplasia. While highly curable, the potential for malignancy associated with molar pregnancies worries the patients, leading them to seek information on the internet. A Facebook page headed by Brazilian specialized physicians in GTD was created in 2013 to provide online support for GTD patients. Objective: The objective of our study was to describe the netnography of Brazilian patients with GTD on Facebook (FBGTD) and to evaluate whether their experiences differed depending on whether they received care in a Brazilian gestational trophoblastic disease reference center (BRC) or elsewhere. Methods: This was a cross-sectional study using G Suite Google Platform. The members of FBGTD were invited to participate in a survey from March 6 to October 5, 2017, and a netnographic analysis of interactions among the members was performed. Results: The survey was answered by 356 Brazilian GTD patients: 176 reference center patients (RCP) treated at a BRC and 180 nonreference center patients (NRCP) treated elsewhere. On comparing the groups, we found that RCP felt safer and more confident at the time of diagnosis of GTD (P=.001). RCP were more likely to utilize FBGTD subsequent to a referral by health assistants (P

Background: Launched in 2006 for patients with amyotrophic lateral sclerosis, PatientsLikeMe is an online community offering patient-reported outcomes, symptom tracking, and social features. Every member of the site can see all the data reported by every other member, view aggregated reports, identify “patients like them,” and learn about treatment options in order to live better with their condition. In previous studies, members reported benefits such as improved condition knowledge, increased medication adherence, and better management of side effects. However, the site evolved in 2011 from condition-specific “vertical” communities consisting only of people with the same disease to a “generalized platform,” in which every patient could connect with every other patient regardless of condition and with generic, rather than condition-specific, data tools. Some, but not all, communities received further custom tracking tools. Objective: We aimed to understand (1) whether members of PatientsLikeMe using the generalized platform still reported similar benefits and (2) assess factors associated with benefits, such as community customization, site use, and patient activation. Methods: A cross-sectional retrospective custom survey was fielded to 377,625 members between 2016 and 2017 including the Patient Activation Measure (PAM). A benefit index was developed for comparability across conditions. Results: The invitation was viewed by 26,048 members of whom 11,915 did not respond, 5091 opted out, 1591 provided partial data, and 17 were screened out. Complete responses were received from 7434 participants. Users perceived greatest benefit in understanding how their condition may affect them (4530/6770, 66.91% participants, excluding “does not apply” answers), understanding what might help them live better with their condition (4247/6750, 62.92%), which treatments were available (4143/6898, 60.06%), understanding treatment side effects (4182/6902, 60.59%), and important factors in making treatment decisions (3919/6813, 57.52%). The benefit index was 29% higher for the “most activated” patients (PAM level 4 vs PAM level 1; relative risk [RR]=1.29, P

Background: Online communities of practice (oCoPs) may emerge from interactions on social media. These communities offer an open digital space and flat role hierarchy for information sharing and provide a strong group identity, rapid flow of information, content curation, and knowledge translation. To date, there is only a small body of evidence in medicine or health care to verify the existence of an oCoP. Objective: We aimed to examine the emergence of an oCoP through the study of social media interactions of the free open access medical education (FOAM) movement. Methods: We examined social media activity in Twitter by analyzing the network centrality metrics of tweets with the #FOAMed hashtag and compared them with previously validated criteria of a community of practice (CoP). Results: The centrality analytics of the FOAM community showed concordance with aspects of a general CoP (in terms of community, domain, and practice), as well as some specific traits of a health care community, including social control, common purpose, flat hierarchy, and network-based and concrete achievement. Conclusions: This study demonstrated preliminary evidence of an oCoP focused on education and based on social media interactions. Further examination of the topology of the network is needed to definitely prove the existence of an oCoP. Given that these communities result in significant knowledge translation and practice change, further research in this area appears warranted. [J Med Internet Res 2017;19(7):e252]

Background With growing numbers of adults turning to the internet to get answers for health-related questions, online communities provide platforms with participatory networks to deliver health information and social support. However, to optimize the benefits of these online communities, these platforms must market effectively to attract new members and promote community growth. Objective The aim of this study was to assess the engagement results of Facebook advertisements designed to increase membership in the LungCancer.net online community. Methods In the fall of 2017, a series of 5 weeklong Facebook advertisement campaigns were launched targeting adults over the age of 18 years with an interest in lung cancer to increase opt ins to the LungCancer.net community (ie, the number of people who provided their email to join the site). Results The advertisements released during this campaign had a sum reach of 91,835 people, and 863 new members opted into the LungCancer.net community by providing their email address. Females aged 55 to 64 years were the largest population reached by the campaign (31,401/91,835; 34.29%), whereas females aged 65 and older were the largest population who opted into the LungCancer.net community (307/863; 35.57%). A total of US $1742 was invested in the Facebook campaigns, and 863 people opted into LungCancer.net, resulting in a cost of US $2.02 per new member. Conclusions This research demonstrates the feasibility of using Facebook advertising to promote and grow online health communities. More research is needed to compare the effectiveness of various advertising approaches. Public health professionals should consider Facebook campaigns to effectively connect intended audiences to health information and support.

Background: Health care social media used for health information exchange and emotional communication involves different types of users, including patients, caregivers, and health professionals. However, it is difficult to identify different stakeholders because user identification data are lacking due to privacy protection and proprietary interests. Therefore, identifying the concerns of different stakeholders and how they use health care social media when confronted with huge amounts of health-related messages posted by users is a critical problem. Objective: We aimed to develop a new content analysis method using text mining techniques applied in health care social media to (1) identify different health care stakeholders, (2) determine hot topics of concern, and (3) measure sentiment expression by different stakeholders. Methods: We collected 138,161 messages posted by 39,606 members in lung cancer, diabetes, and breast cancer forums in the online community MedHelp.org over 10 years (January 2007 to October 2016) as experimental data. We used text mining techniques to process text data to identify different stakeholders and determine health-related hot topics, and then analyzed sentiment expression. Results: We identified 3 significantly different stakeholder groups using expectation maximization clustering (3 performance metrics: Rand=0.802, Jaccard=0.393, Fowlkes-Mallows=0.537; P

Background: Health promotion interventions on social networking sites can communicate individually tailored content to a large audience. User-generated content helps to maximize engagement, but health promotion websites have had variable success in supporting user engagement. Objective: The aim of our study was to examine which elements of moderator and participant behavior stimulated and maintained interaction with a sexual health promotion site on Facebook. Methods: We examined the pattern and content of posts on a Facebook page. Google analytics was used to describe the number of people using the page and viewing patterns. A qualitative, thematic approach was used to analyze content. Results: During the study period (January 18, 2010, to June 27, 2010), 576 users interacted 888 times with the site through 508 posts and 380 comments with 93% of content generated by users. The user-generated conversation continued while new participants were driven to the site by advertising, but interaction with the site ceased rapidly after the advertising stopped. Conversations covered key issues on chlamydia and chlamydia testing. Users endorsed testing, celebrated their negative results, and modified and questioned key messages. There was variation in user approach to the site from sharing of personal experience and requesting help to joking about sexually transmitted infection. The moderator voice was reactive, unengaged, tolerant, simplistic, and was professional in tone. There was no change in the moderator approach throughout the period studied. Conclusions: Our findings suggest this health promotion site provided a space for single user posts but not a self-sustaining conversation. Possible explanations for this include little new content from the moderator, a definition of content too narrow to hold the interest of participants, and limited responsiveness to user needs. Implications for health promotion practice include the need to consider a life cycle approach to online community development for health promotion and the need for a developing moderator strategy to reflect this. This strategy should reflect two facets of moderation for online health promotion interventions: (1) unengaged and professional oversight to provide a safe space for discussion and to maintain information quality, and (2) a more engaged and interactive presence designed to maintain interest that generates new material for discussion and is responsive to user requests. [J Med Internet Res 2014;16(4):e108]

BackgroundThe rise of social media proved to be a fertile ground for the expansion of the acquired immune deficiency syndrome (AIDS)-denialist movement (in the form of online communities). While there is substantial literature devoted to disproving AIDS-denialist views, there is a lack of studies exploring AIDS-denialists online communities that interact with an external environment. ObjectiveWe explored three research areas: (1) reasons for newcomers to come to an AIDS-denialist community, (2) the patterns of interactions of the community with the newcomers, and (3) rhetorical strategies that denialists use for persuasion in the veracity of their views. MethodsWe studied the largest AIDS-denialist community on one of the most popular social networking services in Russia. We used netnography as a method for collecting data for qualitative analysis and observed the community for 9 months (at least 2-3 times a week). While doing netnography, we periodically downloaded community discussions. In total, we downloaded 4821 posts and comments for analysis. Grounded theory approach was used for data analysis. ResultsMost users came to the community for the following reasons: their stories did not fit the unitary picture of AIDS disease progression translated by popular medical discourse, health problems, concern about HIV-positive tests, and desire to dissuade community members from false AIDS beliefs. On the basis of strength in AIDS-denialist beliefs, we constructed a typology of the newcomers consisting of three ideal-typical groups: (1) convinced: those who already had become denialists before coming to the group, (2) doubters: those who were undecided about the truth of either human immunodeficiency virus (HIV) science theory or AIDS-denialist theory, and (3) orthodox: those who openly held HIV science views. Reception of a newcomer mainly depended on the newcomer’s belief status. Reception was very warm for the convinced, cold or slightly hostile for the doubters, and extremely hostile or derisive for the orthodox. We identified seven main rhetorical strategies of persuasion used by the denialists on the “undecided”. ConclusionsContrary to the widespread public health depiction of AIDS denialists as totally irrational, our study suggests that some of those who become AIDS denialists have sufficiently reasonable grounds to suspect that “something is wrong” with scientific theory, because their personal experience contradicts the unitary picture of AIDS disease progression. Odd and inexplicable practices of some AIDS centers only fuel these people’s suspicions. We can conclude that public health practitioners’ practices may play a role in generating AIDS-denialist sentiments. In interactions with the newcomers, the experienced community members highlighted the importance of personal autonomy and freedom of choice in decision making consistent with the consumerist ideology of health care. The study findings suggest that health care workers should change a one-size-fits-all mode of counseling for a more complex and patient-tailored approach, allowing for diversity of disease progression scenarios and scientific uncertainty.

Health care professionals, patients, caregivers, family, friends, and other supporters are increasingly joining online health communities to share information and find support. But social Web (Web 2.0) technology alone does not create a successful online community. Building and sustaining a successful community requires an enabler and strategic community management. Community management is more than moderation. The developmental life cycle of a community has four stages: inception, establishment, maturity, and mitosis. Each stage presents distinct characteristics and management needs. This paper describes the community management strategies, resources, and expertise needed to build and maintain a thriving online health community; introduces some of the challenges; and provides a guide for health organizations considering this undertaking. The paper draws on insights from an ongoing study and observation of online communities as well as experience managing and consulting a variety of online health communities. Discussion includes effective community building practices relevant to each stage, such as outreach and relationship building, data collection, content creation, and other proven techniques that ensure the survival and steady growth of an online health community.

Background: Health and psychosocial outcomes for young adults affected by cancer have improved only minimally in decades, partially due to a lack of relevant support and information. Given significant unmet needs involving nutrition and exercise, it is important to understand how this audience handles information about food and fitness in managing their cancer experiences. Objective: Using the theory of illness trajectories as a framework, we explored how four lines of work associated with living with a chronic illness such as cancer (illness, everyday life, biographical, and the recently explicated construct of communication work) impacts and is impacted by nutrition and exercise concerns. Methods: Following a search to extract all nutrition- and exercise-related content from the prior 3 years (January 2008 to February 2011), a sample of more than 1000 posts from an online support community for young adults affected by cancer were qualitatively analyzed employing iterative, constant comparison techniques. Sensitized by illness trajectory research and related concepts, 3 coders worked over 4 months to examine the English-language, de-identified text files of content. Results: An analysis of discussion board threads in an online community for young adults dealing with cancer shows that nutrition and exercise needs affect the young adults’ illness trajectories, including their management of illness, everyday life, biographical, and communication work. Furthermore, this paper helps validate development of the “communication work” variable, explores the “mass personal” interplay of mediated and interpersonal communication channels, and expands illness trajectory work to a younger demographic than investigated in prior research. Conclusions: Applying the valuable concepts of illness, everyday life, biographical, and communication work provides a more nuanced understanding of how young adults affected by cancer handle exercise and nutrition needs. This knowledge can help provide support and interventional guidance for the well-documented psychosocial challenges particular to this demographic as they manage the adversities inherent in a young adult cancer diagnosis. The research also helps explain how these young adults meet communication needs in a “mass personal” way that employs multiple communication channels to meet goals and thus might be more effectively reached in a digital world. [J Med Internet Res 2013;15(5):e102]

Background: Online communities hold great potential as interventions for health, particularly for the management of chronic illness. The social support that online communities can provide has been associated with positive treatment outcomes, including medication adherence. There are few studies that have attempted to assess whether membership of an online community improves health outcomes using rigorous designs. Objective: Our objective was to conduct a rigorous proof-of-concept randomized controlled trial of an online community intervention for improving adherence to asthma medicine. Methods: This 9-week intervention included a sample of asthmatic adults from the United Kingdom who were prescribed an inhaled corticosteroid preventer. Participants were recruited via email and randomized to either an “online community” or “no online community” (diary) condition. After each instance of preventer use, participants (N=216) were required to report the number of doses of medication taken in a short post. Those randomized to the online community condition (n=99) could read the posts of other community members, reply, and create their own posts. Participants randomized to the no online community condition (n=117) also posted their medication use, but could not read others’ posts. The main outcome measures were self-reported medication adherence at baseline and follow-up (9 weeks postbaseline) and an objective measure of adherence to the intervention (visits to site). Results: In all, 103 participants completed the study (intervention: 37.8%, 39/99; control: 62.2%, 64/117). MANCOVA of self-reported adherence to asthma preventer medicine at follow-up was not significantly different between conditions in either intention-to-treat (P=.92) or per-protocol (P=.68) analysis. Site use was generally higher in the control compared to intervention conditions. Conclusions: Joining an online community did not improve adherence to preventer medication for asthma patients. Without the encouragement of greater community support or more components to sustain engagement over time, the current findings do not support the use of an online community to improve adherence. ClinicalTrial: International Standard Randomized Controlled Trial Number (ISRCTN): 29399269; http://www.isrctn.com/ISRCTN29399269/29399269 (Archived by WebCite at http://www.webcitation.org/6fUbEuVoT) [J Med Internet Res 2016;18(6):e122]

Background: Spouses and partners (“partners”) of women at-risk for (“previvors”) and surviving with hereditary breast/ovarian cancer are a primary source of support within their families. Yet, little is known about partners’ needs for psychoeducational intervention to enhance their cancer risk knowledge, coping, and support role functioning. Objective: To determine the type and range of need for psychoeducational intervention among partners of hereditary breast cancer previving and surviving women, and to understand the potential role of the Internet and other communication channels in meeting that need. Methods: We conducted a secondary data analysis on partners’ needs that were originally assessed via an online community-based organization devoted to hereditary breast cancer. Partners’ demographic characteristics, need for psychoeducation, and likelihood of using various communication channels were assessed along with other constructs. Analyses examined commonly-occurring clusters of likely intervention use and by communication channel. Results: Partners (n =143) endorsed a moderately high level of need for psychoeducation and did so across multiple content areas (e.g., role functioning, decision making, communication, intimacy). Factor analysis identified three commonly-preferred communication channels: 1) self-help materials, 2) online interactions, and 3) interpersonal interactions. A cluster analysis among these factors identified three groups of partners based on their likelihood of psychoeducational intervention use (low [18%], moderate [55%], and high [27%] users). In a covariate-adjusted MANOVA, moderate and high intervention users reported significantly greater need for psychoeducation compared to low users (F 2,132 = 9.15, P < .001). Conclusions: A majority of assessed partners perceived a need for psychoeducational interventions surrounding hereditary breast cancer risk. Internet-based, interactive resources may be an efficient mechanism to reach large numbers of partners with tailored content. Research is warranted to inform the design and deployment of these resources to ensure quality and high impact, and ultimately to examine ways to integrate these resources into clinical care. [J Med Internet Res 2012;14(1):e15]

BackgroundKnowledge Translation (KT) plays a vital role in the modern health care community, facilitating the incorporation of new evidence into practice. Web 2.0 tools provide a useful mechanism for establishing an online KT environment in which health practitioners share their practice-related knowledge and experiences with an online community of practice. We have implemented a Web 2.0 based KT environment—an online discussion forum—for pediatric pain practitioners across seven different hospitals in Thailand. The online discussion forum enabled the pediatric pain practitioners to share and translate their experiential knowledge to help improve the management of pediatric pain in hospitals. ObjectiveThe goal of this research is to investigate the knowledge sharing dynamics of a community of practice through an online discussion forum. We evaluated the communication patterns of the community members using statistical and social network analysis methods in order to better understand how the online community engages to share experiential knowledge. MethodsStatistical analyses and visualizations provide a broad overview of the communication patterns within the discussion forum. Social network analysis provides the tools to delve deeper into the social network, identifying the most active members of the community, reporting the overall health of the social network, isolating the potential core members of the social network, and exploring the inter-group relationships that exist across institutions and professions. ResultsThe statistical analyses revealed a network dominated by a single institution and a single profession, and found a varied relationship between reading and posting content to the discussion forum. The social network analysis discovered a healthy network with strong communication patterns, while identifying which users are at the center of the community in terms of facilitating communication. The group-level analysis suggests that there is strong interprofessional and interregional communication, but a dearth of non-nurse participants has been identified as a shortcoming. ConclusionsThe results of the analysis suggest that the discussion forum is active and healthy, and that, though few, the interprofessional and interinstitutional ties are strong.

BackgroundSocial networks play an important role in smoking. Provision of social support during cessation is a cornerstone of treatment. Online social networks for cessation are ubiquitous and represent a promising modality for smokers to receive and provide the support necessary for cessation. There are no existing measures specific to online social support for smoking cessation. ObjectiveThe objective was to develop a measure of social support to be used in online smoking cessation treatment research. MethodsInitial items for the Online Social Support for Smokers Scale (OS4) were based on existing theory and scales delineated in various taxonomies. Preliminary field analysis (N = 73) was conducted on 23 initial items to optimize the scale. Further development was conducted on a refined 15-item scale in the context of a large randomized trial of Internet and telephone cessation treatment with follow-ups at 3, 6, 12, and 18 months. In all, 1326 participants were randomized to an enhanced Internet arm that included a large online social network; psychometric analyses employed 3-month follow-up data from those reporting use of the enhanced Internet intervention at least once (n = 873). Items were subjected to a factor analysis, and the internal consistency reliability of the scale was examined along with construct and criterion validity. Other measures used in the study included demographics, nicotine dependence, partner support for cessation, general social support, social integration, stress, depression, health status, online community use, Internet use behaviors, intervention satisfaction, and 30-day point prevalence abstinence. ResultsThe final 12-item OS4 scale demonstrated high internal consistency reliability (Cronbach alphas .86-.89) across demographic and smoking strata of interest. The OS4 also demonstrated good construct and criterion validity, with the directionality of the observed associations providing support for most a priori hypotheses. Significant Pearson correlations were observed between the OS4 and the Partner Interaction Questionnaire (PIQ) Positive subscale (ρ = .24, P < .001). As hypothesized, participants with the highest OS4 scores were more likely to have actively participated in the enhanced Internet community and to have high levels of satisfaction with the enhanced Internet intervention. In logistic regression analyses, the OS4 was highly predictive of 30-day point-prevalence abstinence at 6, 12, and 18 months (all P values

Background Patients with multiple sclerosis (MS) may face barriers, such as treatment fatigue, memory problems, or side effects, that may influence their adherence to medication. Objective The objective of our study was to use an online community to develop a self-report questionnaire to quantify adherence and barriers to achieving adherence, that is specific to MS disease-modifying treatments (DMTs) and predictive of missed doses. Methods A review of the scientific literature and analysis of discussions between MS patients on PatientsLikeMe.com were used to generate survey items salient to patients. Cognitive debriefing was used to refine the items. The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ) contains 30 questions in three subscales: Barriers, Side Effects, and Coping Strategies. Results MS patients completed an online survey (response rate: 431 of 1209 invited, 35.7%). Between 16% (14/86) and 51% (51/100) of MS patients missed at least 1 dose of their DMT in the previous 28 days, with significant between-treatment differences. The MS-TAQ Barriers scale was positively correlated with the proportion of doses missed (r = .5), demonstrating a stronger relationship between adherence and perceived barriers than was found with clinical or demographic variables (r ≈ .3). The Coping Strategies subscale was negatively correlated with missed doses (r = -.3), suggesting that use of more coping strategies is associated with higher adherence. Conclusions Online communities can provide domains of interest and psychometric data to more rapidly develop and prototype patient-reported outcome instruments. The MS-TAQ offers patients and clinicians a simple method for identifying barriers to adherence, which may then be targeted through interventions.

Starting a new online community with a limited number of members who have not self-selected for participation in the community is challenging. The space must appear active to lure visitors to return; when the pool of participants is small, a large fraction must be converted from lurkers to contributors, and contributors must receive responses quickly to encourage continued participation. We report on strategies for overcoming these challenges and our experience implementing them within an online community add-on to an existing Internet-mediated walking program. Concentrated study recruitment increased the effective membership size. Having few conversation spaces rather than many specialized ones, staff seeding of the forums before members were invited to visit, and staff posting of new topics when there were conversation lulls, all helped to make the forums appear active. In retrospect, using even fewer separate spaces and displaying a flat rather than nested reply structure would have made the forums appear even more active. Contests with small prizes around participation in the forums and around meeting walking goals generated a lot of discussion; a contest for first-time posters was especially effective at moving lurkers to post. Staff efforts to elicit participation by asking questions had mixed success. Staff replies to posts that had not received member replies created a feeling of responsiveness despite limited membership.

Background The association between greater utilization of Web-assisted tobacco interventions and increased abstinence rates is well recognized. However, there is little information on how utilization of specific website features influences quitting. Objective To determine the association between utilization of informational, interactive, and online community resources (eg. bulletin boards) and abstinence rates, with the broader objective to identify potential strategies for improving outcomes for Web-assisted tobacco interventions. Methods In Spring 2004, a cohort of 607 quitplan.com users consented to participate in an evaluation of quitplan.com, a Minnesota branded version of QuitNet.com. We developed utilization measures for different site features: general information, interactive diagnostic tools and quit planning tools, online expert counseling, passive (ie, reading of bulletin boards) and active (ie, public posting) online community engagement, and one-to-one messaging with other virtual community members. Using bivariate, multivariate, and path analyses, we examined the relationship between utilization of specific site features and 30-day abstinence at 6 months. Results The most commonly used resources were the interactive quit planning tools (used by 77% of site users). Other informational resources (ie, quitting guides) were used more commonly (60% of users) than passive (38%) or active (24%) community features. Online community engagement through one-to-one messaging was low (11%) as was use of online counseling (5%). The 30-day abstinence rate among study participants at 6 months was 9.7% (95% Confidence Interval [CI] 7.3% - 12.1%). In the logistic regression model, neither the demographic data (eg, age, gender, education level, employment, or insurance status) nor the smoking-related data (eg, cigarettes per day, time to first morning cigarette, baseline readiness to quit) nor use of smoking cessation medications entered the model as significant predictors of abstinence. Individuals who used the interactive quit planning tools once, two to three times, or four or more times had an odds of abstinence of 0.65 (95% Confidence Interval [CI] 0.22 - 1.94), 1.87 (95% CI 0.77 - 4.56), and 2.35 (95% CI 1.0 - 5.58), respectively. The use of one-to-one messages (reference = none vs 1 or more) entered the final model as potential predictor for abstinence, though the significance of this measure was marginal (OR = 1.91, 95% CI 0.92 - 3.97, P = .083). In the path analysis, an apparent association between active online community engagement and abstinence was accounted for in large part by increased use of interactive quitting tools and one-to-one messaging. Conclusions Use of interactive quitting tools, and perhaps one-to-one messaging with other members of the online community, was associated with increased abstinence rates among quitplan.com users. Designs that facilitate use of these features should be considered.

Background The term Web 2.0 became popular following the O’Reilly Media Web 2.0 conference in 2004; however, there are difficulties in its application to health and medicine. Principally, the definition published by O’Reilly is criticized for being too amorphous, where other authors claim that Web 2.0 does not really exist. Despite this skepticism, the online community using Web 2.0 tools for health continues to grow, and the term Medicine 2.0 has entered popular nomenclature. ObjectiveThis paper aims to establish a clear definition for Medicine 2.0 and delineate literature that is specific to the field. In addition, we propose a framework for categorizing the existing Medicine 2.0 literature and identify key research themes, underdeveloped research areas, as well as the underlying tensions or controversies in Medicine 2.0’s diverse interest groups. Methods In the first phase, we employ a thematic analysis of online definitions, that is, the most important linked papers, websites, or blogs in the Medicine 2.0 community itself. In a second phase, this definition is then applied across a series of academic papers to review Medicine 2.0’s core literature base, delineating it from a wider concept of eHealth. Results The terms Medicine 2.0 and Health 2.0 were found to be very similar and subsume five major salient themes: (1) the participants involved (doctors, patients, etc); (2) its impact on both traditional and collaborative practices in medicine; (3) its ability to provide personalized health care; (4) its ability to promote ongoing medical education; and (5) its associated method- and tool-related issues, such as potential inaccuracy in enduser-generated content. In comparing definitions of Medicine 2.0 to eHealth, key distinctions are made by the collaborative nature of Medicine 2.0 and its emphasis on personalized health care. However, other elements such as health or medical education remain common for both categories. In addition, this emphasis on personalized health care is not a salient theme within the academic literature. Of 2405 papers originally identified as potentially relevant, we found 56 articles that were exclusively focused on Medicine 2.0 as opposed to wider eHealth discussions. Four major tensions or debates between stakeholders were found in this literature, including (1) the lack of clear Medicine 2.0 definitions, (2) tension due to the loss of control over information as perceived by doctors, (3) the safety issues of inaccurate information, and (4) ownership and privacy issues with the growing body of information created by Medicine 2.0. Conclusion This paper is distinguished from previous reviews in that earlier studies mainly introduced specific Medicine 2.0 tools. In addressing the field’s definition via empirical online data, it establishes a literature base and delineates key topics for future research into Medicine 2.0, distinct to that of eHealth.

Background: The prevalence and value of patient-generated health text are increasing, but processing such text remains problematic. Although existing biomedical natural language processing (NLP) tools are appealing, most were developed to process clinician- or researcher-generated text, such as clinical notes or journal articles. In addition to being constructed for different types of text, other challenges of using existing NLP include constantly changing technologies, source vocabularies, and characteristics of text. These continuously evolving challenges warrant the need for applying low-cost systematic assessment. However, the primarily accepted evaluation method in NLP, manual annotation, requires tremendous effort and time. Objective: The primary objective of this study is to explore an alternative approach—using low-cost, automated methods to detect failures (eg, incorrect boundaries, missed terms, mismapped concepts) when processing patient-generated text with existing biomedical NLP tools. We first characterize common failures that NLP tools can make in processing online community text. We then demonstrate the feasibility of our automated approach in detecting these common failures using one of the most popular biomedical NLP tools, MetaMap. Methods: Using 9657 posts from an online cancer community, we explored our automated failure detection approach in two steps: (1) to characterize the failure types, we first manually reviewed MetaMap’s commonly occurring failures, grouped the inaccurate mappings into failure types, and then identified causes of the failures through iterative rounds of manual review using open coding, and (2) to automatically detect these failure types, we then explored combinations of existing NLP techniques and dictionary-based matching for each failure cause. Finally, we manually evaluated the automatically detected failures. Results: From our manual review, we characterized three types of failure: (1) boundary failures, (2) missed term failures, and (3) word ambiguity failures. Within these three failure types, we discovered 12 causes of inaccurate mappings of concepts. We used automated methods to detect almost half of 383,572 MetaMap’s mappings as problematic. Word sense ambiguity failure was the most widely occurring, comprising 82.22% of failures. Boundary failure was the second most frequent, amounting to 15.90% of failures, while missed term failures were the least common, making up 1.88% of failures. The automated failure detection achieved precision, recall, accuracy, and F1 score of 83.00%, 92.57%, 88.17%, and 87.52%, respectively. Conclusions: We illustrate the challenges of processing patient-generated online health community text and characterize failures of NLP tools on this patient-generated health text, demonstrating the feasibility of our low-cost approach to automatically detect those failures. Our approach shows the potential for scalable and effective solutions to automatically assess the constantly evolving NLP tools and source vocabularies to process patient-generated text. [J Med Internet Res 2015;17(8):e212]

BackgroundThe Internet provides new opportunities for parents of children with difficult illnesses and disabilities to find information and support. The Internet is particularly important for caregivers of children with special needs due to numerous health-related decisions they face. For at-risk populations, online support communities can become key settings and channels for health promotion and communication. ObjectiveThis study is an initial exploration of the information-seeking and information-provision processes present in an online support community, which is an area of opportunity and interest for Internet-based medical research and practice. The aim of this study was to explore and describe information-related processes of uncertainty management in relationship to clubfoot. Specifically, the study explored interpersonal communication (information seeking and provision) in an online support community serving the needs of parents of children with clubfoot. MethodsThe study population consisted of messages posted to an online community by caregivers (parents) of children with clubfoot. The theoretical framework informing the study was the Uncertainty Management Theory (UMT). The study used content analysis to explore and categorize the content of 775 messages. ResultsWomen authored 664 of 775 messages (86%) and men authored 47 messages (6%). Caregivers managed uncertainty through information seeking and provision behaviors that were dynamic and multilayered. The ratio of information-seeking messages to information-provision responses was 1 to 4. All five types of information-seeking behaviors proposed by Brashers’ schema were identified, most of them being correlated. Information seeking using direct questions was found to be positively correlated to self-disclosure (r=.538), offering of a candidate answer (r=.318), and passive information seeking (r=.253). Self-disclosure was found to be positively correlated to provision of a candidate answer (r=.324), second-guessing (r=.149), and passive information seeking (r=.366). Provision of a candidate answer was found to be positively correlated with second-guessing (r=.193) and passive information seeking (r=.223). Second-guessing was found to be positively correlated to passive information seeking (r=.311). All correlations reported above were statistically significant (P

Background Approximately half of American adults do not meet recommended physical activity guidelines. Face-to-face lifestyle interventions improve health outcomes but are unlikely to yield population-level improvements because they can be difficult to disseminate, expensive to maintain, and inconvenient for the recipient. In contrast, Internet-based behavior change interventions can be disseminated widely at a lower cost. However, the impact of some Internet-mediated programs is limited by high attrition rates. Online communities that allow participants to communicate with each other by posting and reading messages may decrease participant attrition. Objective Our objective was to measure the impact of adding online community features to an Internet-mediated walking program on participant attrition and average daily step counts. Methods This randomized controlled trial included sedentary, ambulatory adults who used email regularly and had at least 1 of the following: overweight (body mass index [BMI] ≥ 25), type 2 diabetes, or coronary artery disease. All participants (n = 324) wore enhanced pedometers throughout the 16-week intervention and uploaded step-count data to the study server. Participants could log in to the study website to view graphs of their walking progress, individually-tailored motivational messages, and weekly calculated goals. Participants were randomized to 1 of 2 versions of a Web-based walking program. Those randomized to the “online community” arm could post and read messages with other participants while those randomized to the “no online community" arm could not read or post messages. The main outcome measures were participant attrition and average daily step counts over 16 weeks. Multiple regression analyses assessed the effect of the online community access controlling for age, sex, disease status, BMI, and baseline step counts. Results Both arms significantly increased their average daily steps between baseline and the end of the intervention period, but there were no significant differences in increase in step counts between arms using either intention-to-treat or completers analysis. In the intention-to-treat analysis, the average step count increase across both arms was 1888 ± 2400 steps. The percentage of completers was 13% higher in the online community arm than the no online community arm (online community arm, 79%, no online community arm, 66%, P = .02). In addition, online community arm participants remained engaged in the program longer than no online community arm participants (hazard ratio = 0.47, 95% CI = 0.25 - 0.90, P = .02). Participants with lower baseline social support posted more messages to the online community (P < .001) and viewed more posts (P < .001) than participants with higher baseline social support. Conclusion Adding online community features to an Internet-mediated walking program did not increase average daily step counts but did reduce participant attrition. Participants with low baseline social support used the online community features more than those with high baseline social support. Thus, online communities may be a promising approach to reducing attrition from online health behavior change interventions, particularly in populations with low social support. Trial RegistrationNCT00729040; http://clinicaltrials.gov/ct2/show/NCT00729040 (Archived by WebCite at http://www.webcitation.org/5v1VH3n0A)

Background This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood. Objective PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. Methods Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. Results Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns. Conclusions Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

Background The use of online resources has changed how people manage health care processes. Patients seek information about health conditions, guidance in treatment, and support from peers online, complementary to traditional health care trajectories. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; however, there is a gap in research regarding in what way online communities contribute to patient empowerment. Objective We synthesized research regarding how online communities contribute to patient empowerment to address the research question “In what ways can participation in online communities support patient empowerment?” by studying how patient empowerment is operationalized in different studies. The definition of patient empowerment used in this paper is enablement for people to develop mastery over actions and control over decisions that influence their lives. The mastery is both through processes and outcomes of the development. Methods A systematic review was conducted by searching in the following databases: Scopus, ACM Digital Library, EBSCO (CINAHL and MEDLINE), PubMed, and Web of Science. In total, there were 1187 papers after excluding duplicates, and through selection processes using an analytical framework with definitions of patient empowerment and related concepts, 33 peer-reviewed papers were included. Results Findings indicated that online communities support patient empowerment both as a process and as outcomes of these processes. Additionally, it was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients’ usage. There was a mix between deductive (19/33, 58%), inductive (11/33, 33%), and a mixed approach (3/33, 9%) of studying patient empowerment in various forms. The online communities in most papers (21/33, 64%) were well-established and represented patients’ initiatives. Conclusions There is a need to include professionals' perspectives regarding how health care can embrace patient empowerment through online communities. This systematic review's main contribution is the proposal of a new framework and conceptualization of how patient empowerment in online communities can be understood from different hierarchical levels.

Background In 2010, newly diagnosed narcolepsy cases among children and adolescents were seen in several European countries as a consequence of comprehensive national vaccination campaigns with Pandemrix against H1N1 influenza. Since then, a large number of people have had to live with narcolepsy and its consequences in daily life, such as effects on school life, social relationships, and activities. Initially, the adverse effects were not well understood and there was uncertainty about whether there would be any financial compensation. The situation remained unresolved until 2016, and during these years affected people sought various ways to join forces to handle the many issues involved, including setting up a social media forum. Objective Our aim was to examine how information was shared, and how opinions and beliefs about narcolepsy as a consequence of Pandemrix vaccination were formed through discussions on social media. Methods We used quantitative and qualitative methods to investigate a series of messages posted in a social media forum for people affected by narcolepsy after vaccination. Results Group activity was high throughout the years 2010 to 2016, with peaks corresponding to major narcolepsy-related events, such as the appearance of the first cases in 2010, the first payment of compensation in 2011, and passage of a law on compensation in July 2016. Unusually, most (462/774, 59.7%) of the group took part in discussions and only 312 of 774 (40.3%) were lurkers (compared with the usual 90% rule of thumb for participation in an online community). The conversation in the group was largely factual and had a civil tone, even though there was a long struggle for the link between the vaccine and narcolepsy to be acknowledged and regarding the compensation issue. Radical, nonscientific views, such as those expounded by the antivaccination movement, did not shape the discussions in the group but were being actively expressed elsewhere on the internet. At the outset of the pandemic, there were 18 active Swedish discussion groups on the topic, but most dissolved quickly and only one Facebook group remained active throughout the period. Conclusions The group studied is a good example of social media use for self-help through a difficult situation among people affected by illness and disease. This shows that social media do not by themselves induce trench warfare but, given a good group composition, can provide a necessary forum for managing an emergency situation where health care and government have failed or are mistrusted, and patients have to organize themselves so as to cope.

Background: Self-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. Objective: The 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. Methods: We 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. Results: The 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. Conclusions: In 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.