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.
{"title":"Health Vlogger-Viewer Interaction in Chronic Illness Management.","authors":"Leslie S Liu, Jina Huh, Tina Neogi, Kori Inkpen, Wanda Pratt","doi":"10.1145/2470654.2470663","DOIUrl":"https://doi.org/10.1145/2470654.2470663","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2013 ","pages":"49-58"},"PeriodicalIF":0.0,"publicationDate":"2013-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/2470654.2470663","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32179959","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Tackling Dilemmas in Supporting \"The Whole Person\" in Online Patient Communities.","authors":"Jina Huh, Rupa Patel, Wanda Pratt","doi":"10.1145/2207676.2208535","DOIUrl":"https://doi.org/10.1145/2207676.2208535","url":null,"abstract":"<p><p>Online health communities that engage the patient as a <i>whole person</i> 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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2012 ","pages":"923-926"},"PeriodicalIF":0.0,"publicationDate":"2012-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/2207676.2208535","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"32180592","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Bringing the Field into Focus: User-centered Design of a Patient Expertise Locator.","authors":"Andrea Civan-Hartzler, David W McDonald, Chris Powell, Meredith M Skeels, Marlee Mukai, Wanda Pratt","doi":"10.1145/1753326.1753577","DOIUrl":"https://doi.org/10.1145/1753326.1753577","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2010 ","pages":"1675-1684"},"PeriodicalIF":0.0,"publicationDate":"2010-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/1753326.1753577","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"29606592","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Transforming Clinic Environments into Information Workspaces for Patients.","authors":"Kenton T Unruh, Meredith Skeels, Andrea Civan-Hartzler, Wanda Pratt","doi":"10.1145/1753326.1753354","DOIUrl":"10.1145/1753326.1753354","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2010 ","pages":"183-192"},"PeriodicalIF":0.0,"publicationDate":"2010-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108044/pdf/nihms220577.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"29921868","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Catalyzing Social Support for Breast Cancer Patients.","authors":"Meredith M Skeels, Kenton T Unruh, Christopher Powell, Wanda Pratt","doi":"10.1145/1753326.1753353","DOIUrl":"https://doi.org/10.1145/1753326.1753353","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2010 ","pages":"173-182"},"PeriodicalIF":0.0,"publicationDate":"2010-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/1753326.1753353","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"29921867","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Blowing in the Wind: Unanchored Patient Information Work during Cancer Care.","authors":"Predrag Klasnja, Andrea Civan Hartzler, Kent T Unruh, Wanda Pratt","doi":"10.1145/1753326.1753355","DOIUrl":"10.1145/1753326.1753355","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2010 ","pages":"193-202"},"PeriodicalIF":0.0,"publicationDate":"2010-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913511/pdf/nihms-220573.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"29178157","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Privacy and Technology: Folk Definitions and Perspectives.","authors":"Michelle N Kwasny, Kelly E Caine, Wendy A Rogers, Arthur D Fisk","doi":"10.1145/1358628.1358846","DOIUrl":"https://doi.org/10.1145/1358628.1358846","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2008 ","pages":"3291-3296"},"PeriodicalIF":0.0,"publicationDate":"2008-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/1358628.1358846","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35532884","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}