The use of online forums by people living with HIV for help in understanding personal health information

Purpose: Effective self-management of the human immunodeficiency virus/acquired immune deficiency virus (HIV/AIDS) requires constant vigilance over personal health information. Little is known about the contribution of online communities to this endeavour. This paper reports a study to investigate how people living with HIV/AIDS use an online community to try to understand their personal health information by analysing how health information is shared and asked about, and how the community responds to questions. Methods: A webscraper was used to gather all messages in the 200 most recently active threads in an online forum for people living with HIV/AIDS, resulting in a total of 2455 messages. These were filtered for all instances of individuals sharing their personal health information and asking the community for help in understanding it. Thematic analysis was used to determine the types of questions asked, the personal health information shared and the information that was asked about. Messages from the community aiming to address the questions were analysed using a framework of social support. Results: Approximately 10% of the 2455 messages were found to be involved in this activity: 60 messages contained questions, and 192 messages responded to address the questions. The most frequent type of question was about causation. While users shared a wide variety of information about their health, they most commonly asked about reactions, lab results, and other conditions. Nearly all the messages from the community that aimed to answer the questions provided informational support, which is a type of social support, and the community shared their own personal experiences in these responses. Conclusions: This study demonstrates that online forums are used by people living with HIV to ask specific questions as a means of understanding their personal health information. The analysis provides a better understanding of the questions that people living with HIV have about their health information, and the types of support they receive from the community. The results provide a basis for further research into community support and self-management and will enable improved tools to support self-management

Doctor of Philosophy

dissertationAccording to the Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH), rare diseases affect more than 25 million Americans. The scarcity of information, poor prognosis, and lack of viable treatment options for many conditions causes significant anxiety for rare disease patients and their families. Increasingly, rare disease populations are going online to acquire the support necessary to cope with their health challenges. This dissertation builds upon earlier work by answering a question left largely unaddressed to date: what roles do social support and online support environments play for patients affected by rare disease? This dissertation follows the three article format. In the first article, the author provides a review of important literature from three main areas of research; social support, online support groups/social media, and rare disease. The author also discusses implications of computerized health care services for the field of health promotion and education. In the second article, the author reports the results of a recent study in which a conventional approach to qualitative content analysis was utilized to characterize the followers, focus, founders and formation of sarcoma related Facebook groups. Three different coding schemes for classifying online support groups were identified: group focus or orientation (person vs. population), founder treatment status (patient or nonpatient) and founder disease affiliation status (active treatment, survivor, in memoriam, or external organization). This study suggests that Facebook groups provide a mechanism not only for identifying disease specific groups, but also for facilitating connections between individuals with similar backgrounds or states of disease progression. The third article reports the results of an additional qualitative study examining the online social support experiences of patients in active treatment for Osteosarcoma, a rare and aggressive form of cancer. Evidence of seven distinct types of social support were observed: appraisal, emotional, informational, spiritual, esteem, network and tangible. This study suggests that appraisal and spiritual support may play a bigger role in online support communities than has been previously suggested. It is hoped that this dissertation will serve as a call to action for other researchers. Additional research is needed to adequately address and understand the needs of those affected by rare disease

The Size Conundrum: Why Online Knowledge Markets Can Fail at Scale

In this paper, we interpret the community question answering websites on the StackExchange platform as knowledge markets, and analyze how and why these markets can fail at scale. A knowledge market framing allows site operators to reason about market failures, and to design policies to prevent them. Our goal is to provide insights on large-scale knowledge market failures through an interpretable model. We explore a set of interpretable economic production models on a large empirical dataset to analyze the dynamics of content generation in knowledge markets. Amongst these, the Cobb-Douglas model best explains empirical data and provides an intuitive explanation for content generation through concepts of elasticity and diminishing returns. Content generation depends on user participation and also on how specific types of content (e.g. answers) depends on other types (e.g. questions). We show that these factors of content generation have constant elasticity---a percentage increase in any of the inputs leads to a constant percentage increase in the output. Furthermore, markets exhibit diminishing returns---the marginal output decreases as the input is incrementally increased. Knowledge markets also vary on their returns to scale---the increase in output resulting from a proportionate increase in all inputs. Importantly, many knowledge markets exhibit diseconomies of scale---measures of market health (e.g., the percentage of questions with an accepted answer) decrease as a function of number of participants. The implications of our work are two-fold: site operators ought to design incentives as a function of system size (number of participants); the market lens should shed insight into complex dependencies amongst different content types and participant actions in general social networks.Comment: The 27th International Conference on World Wide Web (WWW), 201

Assessing Communities of Practice in health policy : A conceptual framework as a first step towards empirical research

Peer reviewe

Understanding Why Older Adults With Type 2 Diabetes Join Diabetes Online Communities: Semantic Network Analyses.

BackgroundAs individuals age, chronic health difficulties may disrupt physical and social well-being. Individuals can turn to online communities to interact with similar peers, which may help buffer negative effects resulting from health difficulties.ObjectiveThis study investigated the reasons that older adults join a diabetes online community to better understand the specific resources that are being sought.MethodsWe used semantic network analyses to categorize the reasons participants provided for joining a community during the sign-up process.ResultsThe most frequent reasons for joining were to seek information about their health condition, to help with self-management of health difficulties, for feelings of informational and social support, and for having a community with whom to share. Women were more likely to go online for sharing and companionship as well as for information and social support reasons, whereas men were more likely to go online for general information and self-management reasons.ConclusionsThis study shows the reasons older adults seek to join a diabetes online community: for increased information and support regarding chronic health difficulties. Practitioners may want to consider ways to promote access to online communities among their older patients as a source of health information and a resource to provide a sense of community

Healthy & Active Communities: 2012 Evaluation Report

In the last few decades, the United States has seen a steady increase in the prevalence of obesity. Several national, regional, and local funding efforts have launched in response to the rising obesity rates. The Missouri Foundation for Health (MFH) established the Healthy & Active Communities (H&AC) Initiative in 2005 and has invested over $20 million to support H&AC projects. To date, H&AC projects have conducted activities in 62% of the counties in Missouri, and the City of St. Louis. In line with the national trend, statewide obesity rates continue to rise, signaling a need for a continued focus on obesity prevention in Missouri. However, in the five years since H&AC efforts began (2005-2010), the proportion of Missourians that are overweight or obese has increased at a slower rate. This report is an evaluation of these efforts

Essays on Individuals’ Information Assessment, Information Disclosure, Participation, and Response Behaviors in Online Health Communities

The emergence of online health communities (OHCs) has enabled the use of information technologies to address some social and health needs including but not limited to emotional, social, and health-related issues. This information age has encouraged user generated (UG) content, which facilitates both peer-to-peer and business-to-peer interconnections. This rich and active information epoch (i.e., OHCs) is distinct in that value is generated when peers or participants—who may be content generators and/or content consumers—interact together by exchanging information and receiving supports aimed at addressing their specific needs; and this is made possible through the online platforms or support groups acting as the intermediary among users. In this dissertation, I explore the dynamics that take place in OHCs by answering varied sets of questions and addressing and stretching different scholarly discourses including individuals’ information assessment, information disclosure, participation, and response behaviors in OHCs from a variety of theoretical perspectives including disclosure decision-making model and social presence theory, using diverse methodologies such as text analytics, two-stage least squares regression technique, decision trees analysis, and vector autoregression models in the OHC context. The overarching research question is: How does assessment of information and receiver influence patients’ disclosure ability and what user information disclosure mechanisms elicit effective support behaviors in online health communities? Patients with different disease types visit OHCs to get support and this support is made possible because patients participate by interacting with peers and providing responses to each other’s discussion. Support behaviors, especially in the OHC context, is a concept that covers facets such as, provision of response; interactivity or participation in discussions; relationship management; and offering helpful, appropriate, and relevant feedback responses to meet specific information, social, or emotional needs (Huang et al., 2019; Nambisan et al., 2016; Chen et al., 2019). By exploring the research question and with the unique features that these OHC platforms exhibit—the sharing of information, participation, and receiving of supports—these essays make the following contributions. Theoretically, the findings reveal that a patient’s disease type, the sensitivity of information being disclosed, and patient’s expectation of a response show unique effects on disclosure efficacy. These factors constitute mechanisms by which patients in OHCs are motivated to disclose health information in granular forms that elicit effective community responses and feedback. This information exchange mechanisms thereby, facilitate active community participation through giving or receiving of support, and thus, fostering a dynamic interplay between individuals’ disclosure and response behaviors in the online context. Practically, online health community managers can design their platforms to provide automated and customizable tools that improve patients’ information density and information breadth skills for effective response generation; and from the results, platform management can better understand users that are motivated to participate through giving, thereby encouraging those that are weak in receiving. Also, platform managers can improve the skills of those who are weak in giving for users that are motivated to participate through receiving. Essay 1: Promoting Participants’ Information Disclosure and Response Behaviors in Online Health Communities: Disclosure Decision-Making Model Perspective In this first essay, I extend the literature on information disclosure and the disclosure decision-making model (DD-MM) by examining the factors that influence information disclosure (disclosure efficacy) and the effects of disclosure efficacy on the response users receive (response efficacy) at the granular level. Until now, both concepts—disclosure efficacy and response efficacy have been conceptualized as single constructs. This current study breaks new grounds and broaden the DD-MM model by postulating that the subconstructs have different antecedents and consequences. By examining the relationships between the subconstructs of information assessment, disclosure efficacy, and response efficacy using the two-stage least squares regression method, the results reveal some insightful dynamics, otherwise not possible with unidimensional constructs. Essay 2: Investigation of non-linear effects of first impression cues on participation in online health communities: A decision tree induction theory development approach One notable phenomenon that prior literature has extensively explored in OHC platforms is user participation, which is a necessary condition for platform sustainment and value generation. Extant research has studied user participation as a form of giving, that is, how much users participate in online platforms by generating content (e.g., posting messages, replying to messages, or posting pictures).However, participation in OHC platforms can also take the form of receiving (the consumption for content that has been generated – e.g., reading other’s posts, gaining knowledge and support), and this has witnessed little attention in prior research. This third study argues that the giving and receiving participation is a reaction to user initial participation. In this second essay, based on social presence theory (SPT), I use decision tree analysis to interrogate the effect of first impression in the initial posts on users’ giving and receiving participation. The findings provide meaningful insights for advancing research and for assisting platform managers on what to focus on to encourage users’ giving or receiving participation on their platforms. Essay 3: User Two-way Communication Efficacy Behaviors in Online Health Communities: A Longitudinal Study In this second essay, I crack into some unsupported relationships between disclosure efficacy and response efficacy shown in the previous study, which could be due to the use of cross-sectional data in the analysis, giving nonsignificant findings. Over time, it is possible that the effectiveness of the response that disclosers receive could determine whether users will further disclose or not. For example, if a discloser does not receive valuable response that addresses his or her needs, he or she may stop posting or disclosing information on the platform, thus, leading to lurking behaviors or less recommendations for others to join the online platform. This current study proposes a two-way relationship between disclosure efficacy and response efficacy of users’ interactions in online health communities instead of looking at only the one-way relationship from disclosure efficacy to response efficacy (which showed some insignificant results). From an econometric perspective, time has been shown to play a dynamic role on variables and their relationships. Thus, this current paper uses dynamic vector autoregression (VAR) modeling technique with a longitudinal data set to investigate the one-way and two-way relationships between disclosure efficacy and response efficacy and their dimensions (information density and information breadth) and (information persuasiveness and response persuasiveness), respectively. The analysis reveals a recursive relationship between disclosure efficacy and response efficacy and some of their dimensions. This is a departure from some prior literature that proposed a static linear order in end-user information consumption. The significance of the nonlinear recursive relationship is marked extension of the DD-MM model by establishing the reenforcing effect of its key variables

Harnessing Collaborative Technologies: Helping Funders Work Together Better

This report was produced through a joint research project of the Monitor Institute and the Foundation Center. The research included an extensive literature review on collaboration in philanthropy, detailed analysis of trends from a recent Foundation Center survey of the largest U.S. foundations, interviews with 37 leading philanthropy professionals and technology experts, and a review of over 170 online tools.The report is a story about how new tools are changing the way funders collaborate. It includes three primary sections: an introduction to emerging technologies and the changing context for philanthropic collaboration; an overview of collaborative needs and tools; and recommendations for improving the collaborative technology landscapeA "Key Findings" executive summary serves as a companion piece to this full report

The Role of Diverse Strategies in Sustainable Knowledge Production

Online communities are becoming increasingly important as platforms for large-scale human cooperation. These communities allow users seeking and sharing professional skills to solve problems collaboratively. To investigate how users cooperate to complete a large number of knowledge-producing tasks, we analyze StackExchange, one of the largest question and answer systems in the world. We construct attention networks to model the growth of 110 communities in the StackExchange system and quantify individual answering strategies using the linking dynamics of attention networks. We identify two types of users taking different strategies. One strategy (type A) aims at performing maintenance by doing simple tasks, while the other strategy (type B) aims investing time in doing challenging tasks. We find that the number of type A needs to be twice as big as type B users for a sustainable growth of communities.Comment: 10 pages, 3 figure