Coping with Illness Online: The Case of Patients'Online Communities

This article identifies and analyzes characteristics of patients' online communities (POC) in Sweden. Using a qualitative approach, it presents a fine-grained picture of the communities covering both the structural and cultural factors. Acknowledging the debate about quality of health information online and the potential risks of e-health, the article argues that a deeper understanding of the dynamics of POC, which offer unique aides for the coping process of chronically ill patients, can contribute to the design of the emergent forms of Internet-based health care resources.     

网络健康社区中健康信息传播网络及主题特征研究

【目的/意义】本文利用用户在健康信息问答过程中产生的真实数据,从网络结构和信息主题两个维度对网 络健康社区中的健康信息传播网络及主题特征进行研究,进而为社区的建设和维护提供建议。【方法/过程】首先, 利用社会网络分析法对不同时间阶段的健康信息传播网络进行指标测度和可视化呈现,探究其网络结构特征;然 后结合LDA和已有词表,对社区内健康信息进行主题识别和提取,分析健康信息主题的分布及其变化趋势。【结果/ 结论】本研究发现实验选取的网络健康社区内部的健康信息传播网络具有小世界效应,用户流动性大,关键节点变 更快;用户健康信息问答的内容集中在若干主题,且部分主题随时间呈现一定变化趋势。【创新/局限】网络健康信 息的生成和传播源于用户之间的信息交互。本文从网络结构和信息主题两个维度开展研究,更符合其内部机理, 研究更加深入和具象;网络健康社区种类众多,本文只选择其中一个社区进行研究,可能存在一定的局限性。     

Where Information Society and Community Voice Intersect

Information and communication technology (ICT) development initiatives have begun to acknowledge the power and importance of cultural and community-focused belief systems. Yet the vast majority of such initiatives tend to preidentify developmental goals that communities hold. Paulo Freire's writings have influenced development initiatives by introducing the possibility of working with communities to orient projects. While these “participatory” initiatives have involved soliciting community feedback relative to a research project whose goals were formulated in the university or development institution, they do not go far enough to harness actual visions held by communities. It is important to conceptualize a model and methodology of engaging communities to develop and articulate their own goals of information access and ultimately, an indigenous approach toward cultural, political, and economic aspects of development. This approach holds promise to sustain communities within a return on the investment and efforts of the researcher or institution. This article closes by describing a current initiative in Southern India that reflects the described methodology.     

Assay validity of point-of-care platelet function tests in thrombocytopenic blood samples

IntroductionPoint-of-care (POC) platelet function tests are faster and easier to perform than in-depth assessment by flow cytometry. At low platelet counts, however, POC tests are prone to assess platelet function incorrectly. Lower limits of platelet count required to obtain valid test results were defined and a testing method to facilitate comparability between different tests was established.Materials and methodsWe assessed platelet function in whole blood samples of healthy volunteers at decreasing platelet counts (> 100, 80-100, 50-80, 30-50 and < 30 x10⁹/L) using two POC tests: impedance aggregometry and in-vitro bleeding time. Flow cytometry served as the gold standard. The number of platelets needed to reach 50% of the maximum function (ED₅₀) and the lower reference limit (ED_ref) were calculated to define limits of test validity.ResultsThe minimal platelet count required for reliable test results was 100 x10⁹/L for impedance aggregometry and in-vitro bleeding time but only 30 x10⁹/L for flow cytometry. Comparison of ED₅₀ and ED_ref showed significantly lower values for flow cytometry than either POC test (P value < 0.05) but no difference between POC tests nor between the used platelet agonists within a test method.ConclusionCalculating the ED₅₀ and ED_ref provides an effective way to compare values from different platelet function assays. Flow cytometry enables correct platelet function testing as long as platelet count is > 30 x10⁹/L whereas impedance aggregometry and in-vitro bleeding time are inconsistent unless platelet count is > 100 x10⁹/L.     

Developing online health communities through digital media

Twenty-first century's advancement in information technologies and the emergence of online communities have considerably influenced the online communication channels between patients and health service providers. Online health communities are now popular venues for health information sharing, yet little is known about the benefits in developing countries such as Iran. The aim of this case is to investigate on online health communities in Iran and to have a better understanding of consumer's behaviour using health services. The case integrates social support theory and social media concepts with traditional consumer behaviour theory, notably satisfaction. Using a content analysis of three online health communities indicates the value of social media in developing service quality in health industry.     

在线健康社区用户诊疗信息求助行为——外部因素、个体动机与形成路径

[目的/意义]探究影响在线健康社区用户诊疗信息求助行为的外部因素、个体动机与形成路径,为在线健康社区生态圈的平衡和可持续发展提供参考建议。[方法/过程]以信息生态理论为分析视角,从信息、信息人、信息技术和信息环境4个维度提炼出影响因素和个体动机,并选择技术接受模型为研究框架提出研究假设,进而构建形成路径的理论模型。选取"好大夫在线"、"寻医问药网"、"39健康网"等在线健康社区为实证研究数据来源,采用"情境实验+调查问卷"的研究方法获取437份有效样本数据,利用SmartPLS2.0检验理论模型。[结果/结论]求助自我效能负向影响感知有用性,健康信息素养、求助经验、感知易用性、信息准确性、相关性、及时性正向影响感知有用性,求助自我效能和健康信息素养正向影响感知易用性。按照显著程度,直接影响求助意愿因素依次为求助经验、社会容认度、感知隐私风险、感知易用性、感知有用性、平台信任。     

Crowdsourcing the curriculum: Redefining e-learning practices through peer-generated approaches

ABSTRACT

Inclusion of open resources that employ a peer-generated approach is changing who learns what, from whom, and via what means. With these changes, there is a shift in responsibilities from the course designer to motivated and self-directed learner-participants. While much research on e-learning has addressed challenges of creating and sustaining participatory environments, the development of massive open online courses calls for new approaches that go beyond the existing research on participatory environments in institutionally defined classes. We decenter institutionally defined classes and broaden the discussion to the literature on the creation of open virtual communities and the operation of open online crowds. We draw on literatures on online organizing, learning science, and emerging educational practice to discuss how collaboration and peer production shape learning and enable “crowdsourcing the curriculum.”     

Antecedents of privacy calculus components in virtual health communities

Over the past decade, social media technologies have become effective tools not only for entertainment, but also for online health communications. In virtual health communities (VHCs), the members often share their personal health information (PHI) with other members. These information exchanges provide benefits to both the information providers as well as the recipients. The PHI disclosure, however, may entail privacy concerns. Our study used the privacy calculus model to examine the trade-off between individuals’ expected benefits and privacy concerns when disclosing PHI in social media environments. Our results showed that age, health status, and affective commitment influence the balance between the information disclosure drivers and barriers in the privacy calculus model. More specifically, we found that among members of VHCs, healthier people expect to receive fewer personal benefits of communicating PHI in social media environments. Moreover, individuals who are emotionally attached to online communities expect to both receive and provide more benefits while communicating PHI in those communities. We also observed that individuals who are familiar with but not members of VHCs, especially those who are young and healthy, are more concerned about their PHI privacy in online communities.     

Online news comments: Social network and emergent public

Abstract

The research on online news comments has been dominated by a normative approach and has centered on media engagement. Normativity and media dominance have also featured big in the theoretical discussions on the public sphere. This article presents a case study of online news comments, combining a novel methodological testing of social network hypotheses to examine user–user interactions in online comments with a conceptual discussion of the potential connections between social network research and theories of the public. The social network analysis in this study indicated that users (online commentators) do not constitute highly dense networks, although their relations can be studied as social networks. However, this analysis can only explore limited features of this online phenomenon and requires complementary methods. From a conceptual perspective, this article confirms the role of shared issue for a potential public and also emphasizes the importance of context, actors, and meanings for understanding the public.     

Weak Ties in Networked Communities

Communities with high levels of social capital are likely to have a higher quality of life than communities with low social capital. This is due to the greater ability of such communities to organize and mobilize effectively for collective action because they have high levels of social trust, dense social networks, and well-established norms of mutuality (the major features of social capital). Communities with “bridging” social capital (weak ties across groups) as well as “bonding” social capital (strong ties within groups) are the most effective in organizing for collective action. People who belong to multiple groups act as bridging ties. When people with bridging ties use communication media, such as the Internet, they enhance their capability to educate community members and to organize, as needed, for collective action. This article summarizes evidence from stratified household survey data in Blacksburg, VA, showing that people with weak (bridging) ties across groups have higher levels of community involvement, civic interest, and collective efficacy than people without bridging ties among groups. Moreover, heavy Internet users with bridging ties have higher social engagement, use the Internet for social purposes, and have been attending more local meetings and events since going online than heavy Internet users with no bridging ties. These findings may suggest that the Internet—in the hands of bridging individuals–is a tool for enhancing social relations and information exchange, and for increasing face-to-face interaction, all of which help to build both bonding and bridging social capital in communities.     

New Media/Internet Research Topics of the Association of Internet Researchers

This study summarizes prior reviews of new media and Internet research, and the growth of the term Internet in academic publications and online newsgroups. It then uses semantic network analysis to summarize the interests and concepts of an interdisciplinary group of Internet researchers, as represented by session titles and paper titles and abstracts from the 2003 and 2004 Association of Internet Researchers conferences. In both years, the most frequent words appearing in the paper abstracts included Internet, online, community, social, technology, and research. The 2003 papers emphasized topics such as the social analysis/research of online/Internet communication, community, and information, with particular coverage of access, individuals, groups, digital media, culture; role and process in e-organizations; and world development. The 2004 papers emphasized topics such as access; news and social issues; the role of individuals in communities; user-based studies; usage data; and blogs, women, and search policy, among others.     

在线健康社区知识转移粘滞:从隐私计算视角分析

[目的/意义]旨在探析隐私计算视角下在线健康社区知识转移粘滞影响因素,构建理论模型,为完善在线健康社区健康信息隐私安全保护机制、交互性服务建设与运营管理提出建议。[方法/过程]采用质性研究方法,借助软件NVivo12对访谈资料进行内容分析与编码,归纳影响在线健康社区知识转移粘滞的4个主要因素以及14个子因素,并构建在线健康社区知识转移粘滞影响因素模型。[结果/结论]感知风险、社会收益、情感收益和主观规范对在线健康社区知识转移粘滞都有不同程度的影响。据此,总结相关启示。     

Evaluation and management of leukolysis-mediated pseudohyperkalemia in paediatric leukemic samples

IntroductionLeukolysis-related pseudohyperkalemia due to preanalytical procedures may lead to erroneous (or absence of) treatment based on an invalid lab test result. We aimed to obtain a leukocyte threshold above which leukolysis-related pseudohyperkalemia becomes clinical relevant. Secondly, temporal dynamics of treatment-induced leukocyte decrease were studied to allow tailored implementation of laboratory information system (LIS) decision rules based on the leukocyte threshold to avoid leukolysis-related pseudohyperkalemia.Materials and methodsPotassium results of AU5811 routine chemistry (Beckman Coulter, Brea, California, USA) and iStat point of care (POC) (Abbott Diagnostics, Chicago, Illinois, USA) analysers were compared, the latter method being insensitive to leukolysis caused by pre-analytical procedures. Potassium results were combined with leukocyte counts obtained using a Cell-Dyn Sapphire haematology analyser (Abbott Diagnostics, Santa Clara, California, USA), resulting in 132 unique data triplets. Regression analysis was performed to establish a leukocyte threshold. The Reference Change Value (√2 x Z x √(CV_a² + CV_i²)) was used to calculate maximum allowable difference between routine analyser and POC potassium results (delta_max + 0.58 mmol/L). Temporal analysis on the treatment-induced leukocyte decrease was performed by plotting leukocyte counts in time for all patients above the threshold leukocyte count (N = 41).ResultsEstablished leukocyte threshold was 63 x10⁹/L. Temporal analysis showed leukocyte counts below the threshold within 8 days of treatment for all patients.ConclusionsBased on performed analyses we were able to implement LIS decision rules to reduce pseudohyperkalemia due to preanalytical procedures. This implementation can contribute to a reduction in erroneous (or absence of) treatments in the clinic.     

Access to Public-Sector Information in Europe: Policy,Rights, and Obligations

The article reviews the debates and policies on access to public-sector information (PSI) in Europe in relation to the contests between policies of open access, rights of access to PSI by citizens and business, and the assessment of the cost benefits of PSI to the economy and society. The political dimension of these debates within the European Union is highlighted to demonstrate the complexities of the governance of information within a pan-European regulatory framework.     

Online community information seeking: The queries of three communities in Southwestern Ontario

This paper presents not only mycommunityinfo.ca (MCI) as an innovative World Wide Web (WWW)-based community information (CI) site, but also how its unique approach to facilitating online CI searching on the Web reveals through empirical data how people use such information and communication technologies (ICTs) to address their everyday information needs. The geographic focus for this study is on three communities in Southwestern Ontario. MCI collects unobtrusively query data that are logged daily from its own Web site, the Web sites of three municipal governments, and one municipal agency from this region. One year’s worth of these data was supplied to determine the types of CI that are sought through Web searching. A content analysis of a large purposive sample of all of MCI’s query data reveals more specific and diverse conceptual CI needs between and within communities than those reported in other studies employing different data collection methods. As a result, using a centralized approach to online CI access via the WWW by other CI providers such as the 211 network may be a disservice to its users. Additionally, the findings demonstrate how a thorough analysis of such data may improve the informational content and overall design of municipal government Web sites. The analysis of these data also has the potential of improving current CI taxonomies.     

Gender Scripts and the Internet: The Design and Use of Amsterdam's Digital City,by Els Rommes. Enschede,The Netherlands: Twente University Press, 2002. 304 pp. 24.00. ISBN 9-0365-1774-5

This article seeks to address how religion fits into the larger domain of Internet studies and why studies of religion within computer-mediated communication (CMC) need to be given more attention. An argument is made for the need to take religion online more seriously, not just because it is an interesting phenomenon or a popular use of the Internet, but also because religion continues to be an important part of contemporary life for many people. A summary of the growth and development of religion online is presented along with an overview of how religion has been approached and studied on the Internet. This review shows what CMC studies of religion might offer in approaching research questions related to authority, identity construction, and community online. It calls for recognition of the contribution, and possibilities that underrepresented areas within interdisciplinary research, like religion, might offer Internet studies as a whole.     

基于Stacking集成学习的在线健康社区问答信息采纳识别研究

【目的/意义】提出基于Stacking集成学习的问答信息采纳行为识别策略,促进在线健康社区问答的精准化推送、助推数字化医疗服务高质量发展。【方法/过程】构建以集成学习方法和非集成学习方法为基学习器、以逻辑回归算法（LR）为元学习器的Stacking集成学习模型,比较单预测模型、同类预测模型组合、不同类预测模型组合的Stacking集成学习模型预测精度,选取“寻医问药”平台的慢性病问答构建数据集验证模型的优越性,并选取“快速问医生有问必答120”平台数据验证模型的可移植性。【结果/结论】Stacking集成模型相比于单预测模型能够更精准识别被采纳问答信息,模型具有较强的泛化性,可以适用于不同的在线健康社区。【创新/局限】本文基于Stacking集成思想构建两阶段预测模型,并借助机器学习构建最佳预测模型组合,显著提高在线健康社区问答信息采纳识别精度,但伴随问答信息积累,在线健康社区问答模式不断发展变化,考虑结合历史数据和每日更新数据的动态预测方法是未来研究工作重点。     

基于系统评价法的用户在线健康信息接受驱动情境模型构建

[目的/意义]旨在探究用户在线健康信息接受驱动情境,构建维度模型,有利于促进用户对在线健康信息的使用和健康信息服务的推广。[方法/过程]本研究收集和分析国内外用户在线健康信息接受的相关文献,利用系统评价法,结合NVivo12质性分析软件进行分析,梳理并抽取用户在线健康信息接受驱动情境因素,构建用户在线健康信息接受驱动情境维度模型。[结果/结论]用户在线健康信息接受驱动情境主要包括目标导向、认知范式、外源刺激及情感趋同。据此,为优化在线健康信息服务提供相应对策。     

激励机制下在线健康社区用户参与行为演化博弈分析

【目的/意义】研究在线健康社区中用户参与行为和互动模式,了解用户从潜水者向贡献者转化的影响因 素,从而为在线健康社区可持续发展提供参考建议。【方法/过程】本文通过构建激励机制下用户之间、在线健康社 区与用户之间两类有限理性的博弈模型,计算复制动态方程并求解均衡稳定策略,探究用户参与行为转化的影响 因素。【结果/结论】研究表明,在线健康社区中用户参与行为转化与发帖成本、隐私成本以及读帖收益系数成负相 关,与发帖收益系数、其他用户贡献的知识量以及情感支持成正相关,激励机制的引入对用户参与行为转化有积极 促进作用。在对策建议方面,在线健康社区可以从平台设计、氛围营造、用户生成内容、激励机制引入和隐私保障 机制构建五个层面进行优化管理。【创新/局限】本研究将引入激励机制作为在线健康社区的选择策略,未探讨其他 策略因素对于用户参与行为的影响,后续研究可以加以改进。     

复杂网络视角下在线健康社区评论有用性研究

【目的/意义】在线健康社区用户规模庞大,信息量浩如烟海,如何帮助社区管理者和用户判别有用信息,提 高决策效率是亟待解决的问题。【方法/过程】在复杂网络视角下,提出一个新的评论有用性分析框架。首先,采集 在线健康社区患者评论数据,采用文本分析法分析有用评论、非有用评论以及所有评论的主题分布和情感分布,初 步分析各类评论文本的有用性特征;其次,将各类评论文本分别转换为文本关联网络,使用社会网络分析方法进一 步分析其有用性特征;最后,分析评论有用性及其特征与患者发表评论、用户对评论的有用性投票以及文本关联网 络结构特征的关联性,实现基于文本关联网络的评论有用性分析。【结果/结论】有用评论和非有用评论文本关联网 络结构具有一定差异,在线健康社区用户就诊前后的信息需求和经验输出的重点有所不同。【创新/局限】基于复杂 网络视角研究在线健康社区评论有用性,但仅使用了好大夫在线的数据,未来可对更多数量和种类的在线健康社 区信息内容有用性进行研究。