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Health Vlogger-Viewer Interaction in Chronic Illness Management. 慢性疾病管理中的健康视频博主-观众互动。
Leslie S Liu, Jina Huh, Tina Neogi, Kori Inkpen, Wanda Pratt

Health video blogs (vlogs) allow individuals with chronic illnesses to share their stories, experiences, and knowledge with the general public. Furthermore, health vlogs help in creating a connection between the vlogger and the viewers. In this work, we present a qualitative study examining the various methods that health vloggers use to establish a connection with their viewers. We found that vloggers used genres to express specific messages to their viewers while using the uniqueness of video to establish a deeper connection with their viewers. Health vloggers also explicitly sought interaction with their viewers. Based on these results, we present design implications to help facilitate and build sustainable communities for vloggers.

健康视频博客(vlog)允许患有慢性疾病的个人与公众分享他们的故事、经历和知识。此外,健康视频日志有助于在视频博主和观众之间建立联系。在这项工作中,我们提出了一项定性研究,研究了健康视频博主用来与观众建立联系的各种方法。我们发现,视频博主利用类型向观众表达特定的信息,同时利用视频的独特性与观众建立更深层次的联系。健康视频博主也明确寻求与观众互动。基于这些结果,我们提出了设计建议,以帮助促进和建立可持续的视频博主社区。
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引用次数: 83
Tackling Dilemmas in Supporting "The Whole Person" in Online Patient Communities. 解决在在线患者社区中支持“全人”的困境。
Jina Huh, Rupa Patel, Wanda Pratt

Online health communities that engage the patient as a whole person attend to personal and medical needs in a holistic manner. Whether current communities structure interaction between health professionals and patients to address the whole person is an open question. To gain insights into this question, we examined a sample of online patient communities to understand health professionals' involvement in bringing in medical advice into peer-patient conversations. We found the communities fall short in supporting the whole person, because (1) patient expertise and clinical expertise generated by health professionals are shared separately, and (2) patients' quantified data are separate from narrative experiences. Such separation in the design of these systems can lead to limitations in addressing patients' interwoven medical and personal concerns. We discuss dilemmas and design implications for supporting the whole person in online patient communities.

在线健康社区将患者作为一个整体来参与,以整体的方式满足个人和医疗需求。目前的社区是否构建卫生专业人员和患者之间的互动,以解决整个人的问题是一个悬而未决的问题。为了深入了解这个问题,我们检查了一个在线患者社区的样本,以了解卫生专业人员在将医疗建议引入同行患者对话中的参与情况。我们发现社区在支持整个人方面存在不足,因为(1)患者专业知识和卫生专业人员产生的临床专业知识是分开共享的,(2)患者的量化数据与叙述经验是分开的。这些系统设计中的这种分离可能导致在解决患者相互交织的医疗和个人问题方面的限制。我们讨论的困境和设计的含义,以支持整个人在网上病人社区。
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引用次数: 41
Bringing the Field into Focus: User-centered Design of a Patient Expertise Locator. 聚焦领域:以用户为中心的患者专业知识定位器设计。
Andrea Civan-Hartzler, David W McDonald, Chris Powell, Meredith M Skeels, Marlee Mukai, Wanda Pratt

Managing personal aspects of health is challenging for many patients, particularly those facing a serious condition such as cancer. Finding experienced patients, who can share their knowledge from managing a similar health situation, is of tremendous value. Users of health-related social software form a large base of such knowledge, yet these tools often lack features needed to locate peers with expertise. Informed directly by our field work with breast cancer patients, we designed a patient expertise locator for users of online health communities. Using feedback from two focus groups with breast cancer survivors, we took our design through two iterations. Focus groups concluded that expertise locating features proved useful for extending social software. They guided design enhancements by suggesting granular user control through (1) multiple mechanisms to identify expertise, (2) detailed user profiles to select expertise, and (3) varied collaboration levels. Our user-centered approach links field work to design through close collaboration with patients. By illustrating trade-offs made when sharing sensitive health information, our findings inform the incorporation of expertise locating features into social software for patients.

对许多患者来说,管理个人健康方面是一项挑战,尤其是那些面临癌症等严重疾病的患者。找到经验丰富的病人,让他们分享管理类似健康状况的知识,这是非常有价值的。与健康相关的社交软件的用户形成了这类知识的庞大基础,然而这些工具往往缺乏找到具有专业知识的同行所需的功能。根据我们对乳腺癌患者的实地工作,我们为在线健康社区的用户设计了一个患者专业知识定位器。根据两个乳腺癌幸存者焦点小组的反馈,我们的设计经历了两次迭代。焦点小组的结论是,定位功能的专业知识被证明对扩展社交软件很有用。他们通过建议细粒度的用户控制(1)多种机制来识别专业知识,(2)详细的用户配置文件来选择专业知识,以及(3)不同的协作级别来指导设计增强。我们以用户为中心的方法通过与患者密切合作,将现场工作与设计联系起来。通过说明在共享敏感健康信息时所做的权衡,我们的研究结果为将专业知识定位功能纳入患者社交软件提供了信息。
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引用次数: 35
Transforming Clinic Environments into Information Workspaces for Patients. 将诊所环境转变为病人的信息工作空间。
Kenton T Unruh, Meredith Skeels, Andrea Civan-Hartzler, Wanda Pratt

Although clinic environments are a primary location for exchanging information with clinicians, patients experience these spaces as harsh environments to access, use, exchange, and manage information. In this paper, we present results from an ethnographic-inspired study of breast cancer patients actively interacting with information in clinic environments. Through observations and interviews, we observed information interactions in awkward physical positions; inefficient use of existing clinical space; separation of patients from their information and lack of support for collaborative document viewing. These factors compromised patients' abilities to manage their information work when they experienced bursts of information exchange, lack of advance information, fragmented attention, and heightened stress in clinic environments. To overcome these challenges, we identify formative strategies to focus attention, encourage collaboration, and improve communication in clinical settings.

尽管诊所环境是与临床医生交流信息的主要场所,但患者在这些空间中获取、使用、交流和管理信息的环境也很恶劣。在本文中,我们介绍了一项由人种学启发的研究结果,研究对象是在诊所环境中积极与信息互动的乳腺癌患者。通过观察和访谈,我们观察到在尴尬的物理位置进行信息交互;对现有临床空间的低效利用;患者与他们的信息分离以及缺乏对协作文档查看的支持。当患者在诊所环境中经历突发的信息交流、缺乏预先信息、注意力分散和压力增大时,这些因素都会损害他们管理信息工作的能力。为了克服这些挑战,我们确定了在临床环境中集中注意力、鼓励协作和改善沟通的形成性策略。
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引用次数: 0
Catalyzing Social Support for Breast Cancer Patients. 促进对乳腺癌患者的社会支持。
Meredith M Skeels, Kenton T Unruh, Christopher Powell, Wanda Pratt

Social support is a critical, yet underutilized resource when undergoing cancer care. Underutilization occurs in two conditions: (a) when patients fail to seek out information, material assistance, and emotional support from family and friends or (b) when family and friends fail to meet the individualized needs and preferences of patients. Social networks are most effective when kept up to date on the patient's status, yet updating everyone takes effort that patients cannot always put in. To improve this situation, we describe the results of our participatory design activities with breast cancer patients. During this process, we uncovered the information a social network needs to stay informed as well as a host of barriers to social support that technology could help break down. Our resulting prototype, built using Facebook Connect, includes explicit features to reduce these barriers and thus, promote the healthy outcomes associated with strong social support.

在接受癌症治疗时,社会支持是一个至关重要但未得到充分利用的资源。不充分利用发生在两种情况下:(a)当患者未能从家人和朋友那里寻求信息、物质援助和情感支持时,或(b)当家人和朋友未能满足患者的个性化需求和偏好时。当保持病人状态的最新状态时,社交网络是最有效的,然而更新每个人都需要病人付出的努力。为了改善这种情况,我们描述了乳腺癌患者参与设计活动的结果。在这个过程中,我们发现了社交网络需要的信息,以及技术可以帮助打破的社会支持障碍。我们使用Facebook Connect构建的原型包含明确的功能,以减少这些障碍,从而促进与强大的社会支持相关的健康结果。
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引用次数: 157
Blowing in the Wind: Unanchored Patient Information Work during Cancer Care. 随风飘荡:癌症护理过程中的非固定患者信息工作。
Predrag Klasnja, Andrea Civan Hartzler, Kent T Unruh, Wanda Pratt

Patients do considerable information work. Technologies that help patients manage health information so they can play active roles in their health-care, such as personal health records, provide patients with effective support for focused and sustained personal health tasks. Yet, little attention has been paid to patients' needs for information management support while on the go and away from their personal health information collections. Through a qualitative field study, we investigated the information work that breast cancer patients do in such 'unanchored settings'. We report on the types of unanchored information work that patients do over the course of cancer treatment, reasons this work is challenging, and strategies used by patients to overcome those challenges. Our description of unanchored patient information work expands our understanding of patients' information practices and points to valuable design directions for supporting critical but unmet needs.

患者需要做大量的信息工作。个人健康档案等帮助患者管理健康信息,让他们在医疗保健中发挥积极作用的技术,为患者专注和持续地完成个人健康任务提供了有效支持。然而,人们很少关注病人在外出和远离个人健康信息收集时对信息管理支持的需求。通过实地定性研究,我们调查了乳腺癌患者在这种 "非固定环境 "中的信息工作。我们报告了患者在癌症治疗过程中进行的非固定信息工作的类型、这项工作具有挑战性的原因以及患者克服这些挑战的策略。我们对非固定患者信息工作的描述扩展了我们对患者信息实践的理解,并为支持关键但尚未满足的需求指出了有价值的设计方向。
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引用次数: 0
Privacy and Technology: Folk Definitions and Perspectives. 隐私和技术:民间定义和观点。
Michelle N Kwasny, Kelly E Caine, Wendy A Rogers, Arthur D Fisk

In this paper we present preliminary results from a study of individual differences in privacy beliefs, as well as relate folk definitions of privacy to extant privacy theory. Focus groups were conducted with young adults aged 18-28 and older adults aged 65-75. Participants first shared their individual definitions of privacy, followed by a discussion of privacy in six scenarios chosen to represent a range of potentially invasive situations. Taken together, Westin's and Altman's theories of privacy accounted for both younger and older adults' ideas about privacy, however, neither theory successfully accounted for findings across all age and gender groups. Whereas males tended to think of privacy in terms of personal needs and convenience, females focused more on privacy in terms of others, respecting privacy rights, and safety. Older adults tended to be more concerned about privacy of space rather than information privacy. Initial results reinforce the notion that targeting HCI design to the user population, even with respect to privacy, is critically important.

在本文中,我们介绍了隐私信仰的个体差异研究的初步结果,并将民间对隐私的定义与现有的隐私理论联系起来。焦点小组由18-28岁的年轻人和65-75岁的老年人组成。参与者首先分享了他们对隐私的个人定义,然后讨论了六种情况下的隐私,这些情况代表了一系列潜在的侵犯性情况。总的来说,威斯汀和奥特曼的隐私理论解释了年轻人和老年人对隐私的看法,然而,这两种理论都没有成功地解释所有年龄和性别群体的研究结果。男性倾向于从个人需求和便利的角度考虑隐私,而女性更关注他人的隐私,尊重隐私权和安全。老年人往往更关心空间隐私,而不是信息隐私。最初的结果强化了这样一个概念,即针对用户群体的HCI设计,即使是在隐私方面,也是至关重要的。
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引用次数: 59
期刊
Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference
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