Locating Patient Expertise in Everyday Life

dc.contributor.authorCivan, Andrea
dc.contributor.authorMcDonald, David W.
dc.contributor.authorUnruh, Kenton T.
dc.contributor.authorPratt, Wanda
dc.date.accessioned2023-06-08T11:44:32Z
dc.date.available2023-06-08T11:44:32Z
dc.date.issued2009
dc.description.abstractCoping with a new health issue often requires individuals to acquire knowledge and skills to manage personal health. Many patients turn to one another for experiential expertise outside the formal bounds of the health-care system. Internet-based social software can facilitate expertise sharing among patients, but provides only limited ways for users to locate sources of patient expertise. Although much prior research has investigated expertise location and systems to augment expertise sharing in workplace organizations, the transferability of this knowledge to other contexts, such as personal health, is unclear. Guided by expertise locating frameworks drawn from prior work, we conducted a field study to investigate expertise locating in the informal and everyday context of women diagnosed with breast cancer. Similarities between patients' expertise locating practices and practices of professionals in workplace organizations suggest similar support strategies could apply in both contexts. However, unlike professionals, unsolicited advice often triggered patients to locate expertise. They identified expertise through various forms of gatekeeping. The high-stakes nature of problems patients faced also led them to use triangulation strategies in anticipation of breakdowns in expertise location. Based on these key differences, we explored five design additions to social software that could support patients in their critical need to locate patient expertise.en
dc.identifier.doi10.1145/1531674.1531718
dc.identifier.urihttps://dl.eusset.eu/handle/20.500.12015/4884
dc.language.isoen
dc.publisherAssociation for Computing Machinery
dc.relation.ispartofProceedings of the 2009 ACM International Conference on Supporting Group Work
dc.subjectexpertise location
dc.subjectpatient expertise
dc.subjectexpertise sharing
dc.titleLocating Patient Expertise in Everyday Lifeen
gi.citation.publisherPlaceNew York, NY, USA
gi.citation.startPage291–300
gi.citations.count40
gi.citations.elementChiara Libreri, Guendalina Graffigna (2016): How Web 2.0 Shapes Patient Knowledge Sharing, In: Mobile Computing and Wireless Networks, doi:10.4018/978-1-4666-8751-6.ch060
gi.citations.elementNazanin Andalibi, Madison K Flood (2020): Considerations in Designing Digital Peer Support for Mental Health: Interview Study Among Users of a Digital Support System (Buddy Project) (Preprint), doi:10.2196/preprints.21819
gi.citations.elementAmanda Lazar, Norman Makoto Su, Jeffrey Bardzell, Shaowen Bardzell (2019): Parting the Red Sea, In: Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, doi:10.1145/3290605.3300710
gi.citations.elementCarolyn E. Pang, Carman Neustaedter, Bernhard E. Riecke, Erick Oduor, Serena Hillman (2013): Technology preferences and routines for sharing health information during the treatment of a chronic illness, In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, doi:10.1145/2470654.2466232
gi.citations.elementSamantha Adams (2017): Ubiquitous Digital Devices and Health: Reflections on Foucault’s Notion of the ‘Clinic’, In: Law, Governance and Technology Series, doi:10.1007/978-3-319-48342-9_9
gi.citations.elementAndrea Civan-Hartzler, David W. McDonald, Chris Powell, Meredith M. Skeels, Marlee Mukai, Wanda Pratt (2010): Bringing the field into focus, In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, doi:10.1145/1753326.1753577
gi.citations.elementXinning Gui, Yunan Chen, Kathleen H. Pine (2018): Navigating the Healthcare Service "Black Box", In: Proceedings of the ACM on Human-Computer Interaction CSCW(2), doi:10.1145/3274330
gi.citations.elementJoshua Introne, Bryan Semaan, Sean Goggins (2016): A Sociotechnical Mechanism for Online Support Provision, In: Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, doi:10.1145/2858036.2858582
gi.citations.elementAndrea Hartzler, Wanda Pratt (2011): Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians, In: Journal of Medical Internet Research 3(13), doi:10.2196/jmir.1728
gi.citations.elementJohn Vines, Peter C. Wright, David Silver, Maggie Winchcombe, Patrick Olivier (2015): Authenticity, Relatability and Collaborative Approaches to Sharing Knowledge about Assistive Living Technology, In: Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing, doi:10.1145/2675133.2675222
gi.citations.elementPei-Yao Hung, Drew Canada, Michelle A. Meade, Mark S. Ackerman (2022): Data Checkers: A Grid-Based UI for Managing Patient-Generated Data Sharing to Support Collaborative Self-Care, In: Frontiers in Computer Science, doi:10.3389/fcomp.2021.639748
gi.citations.elementEllen L. Rubenstein (2012): “Things my doctor never told me”: Bridging information gaps in an online community, In: Proceedings of the American Society for Information Science and Technology 1(49), doi:10.1002/meet.14504901126
gi.citations.elementDoğa Gatos, Aslı Günay, Güncel Kırlangıç, Kemal Kuscu, Asim Evren Yantac (2021): How HCI Bridges Health and Design in Online Health Communities: A Systematic Review, In: Designing Interactive Systems Conference 2021, doi:10.1145/3461778.3462100
gi.citations.elementMelanie Duckert, Louise Barkhuus (2022): Protecting Personal Health Data through Privacy Awareness, In: Proceedings of the ACM on Human-Computer Interaction GROUP(6), doi:10.1145/3492830
gi.citations.elementNazanin Andalibi, Madison K Flood (2021): Considerations in Designing Digital Peer Support for Mental Health: Interview Study Among Users of a Digital Support System (Buddy Project), In: JMIR Mental Health 1(8), doi:10.2196/21819
gi.citations.elementDrashko Nakikj, Lena Mamykina (2017): A Park or A Highway, In: Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing, doi:10.1145/2998181.2998339
gi.citations.elementSean A Munson, Hasan Cavusoglu, Larry Frisch, Sidney Fels (2013): Sociotechnical Challenges and Progress in Using Social Media for Health, In: Journal of Medical Internet Research 10(15), doi:10.2196/jmir.2792
gi.citations.elementLisa Graham, Anthony Tang, Carman Neustaedter (2016): Help Me Help You, In: Proceedings of the 19th International Conference on Supporting Group Work, doi:10.1145/2957276.2957293
gi.citations.elementJordan Eschler, Eleanor R. Burgess, Madhu Reddy, David C. Mohr (2020): Emergent Self-Regulation Practices in Technology and Social Media Use of Individuals Living with Depression, In: Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems, doi:10.1145/3313831.3376773
gi.citations.elementEleanor R. Burgess, Elizabeth Kaziunas, Maia Jacobs (2022): Care Frictions: A Critical Reframing of Patient Noncompliance in Health Technology Design, In: Proceedings of the ACM on Human-Computer Interaction CSCW2(6), doi:10.1145/3555172
gi.citations.elementG Olson, G Mark, E Churchill, D Rotman (2010): New Missions for a Sociotechnical Infrastructure, In: Computer 11(43), doi:10.1109/mc.2010.321
gi.citations.elementKathleen O'Leary, Arpita Bhattacharya, Sean A. Munson, Jacob O. Wobbrock, Wanda Pratt (2017): Design Opportunities for Mental Health Peer Support Technologies, In: Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing, doi:10.1145/2998181.2998349
gi.citations.elementChiara Libreri, Guendalina Graffigna (2000): How Web 2.0 Shapes Patient Knowledge Sharing, In: Advances in Healthcare Information Systems and Administration, doi:10.4018/978-1-4666-4321-5.ch014
gi.citations.elementGertrude Buttigieg, Christopher Vella (2022): Engaging Patient Groups in End-of-Life, In: Advancing Global Bioethics, doi:10.1007/978-3-030-86386-9_13
gi.citations.elementAmanda Lazar, Emma E. Dixon (2019): Safe Enough to Share, In: Proceedings of the ACM on Human-Computer Interaction CSCW(3), doi:10.1145/3359187
gi.citations.elementLogan Kendall, Andrea Hartzler, Predrag Klasnja, Wanda Pratt (2011): Descriptive analysis of physical activity conversations on Twitter, In: CHI '11 Extended Abstracts on Human Factors in Computing Systems, doi:10.1145/1979742.1979807
gi.citations.elementJinye Peng, Naiquan Zheng, Jianping Fan (2013): Leveraging Social Supports for Improving Personal Expertise on ACL Reconstruction and Rehabilitation, In: IEEE Journal of Biomedical and Health Informatics 2(17), doi:10.1109/titb.2012.2226737
gi.citations.elementChiara Libreri, Guendalina Graffigna (2016): How Web 2.0 Shapes Patient Knowledge Sharing, In: Business Intelligence, doi:10.4018/978-1-4666-9562-7.ch105
gi.citations.elementMaia L. Jacobs, James Clawson, Elizabeth D. Mynatt (2015): Comparing Health Information Sharing Preferences of Cancer Patients, Doctors, and Navigators, In: Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing, doi:10.1145/2675133.2675252
gi.citations.elementMatthew Willis (2019): I’m Trying to Find my Way of Staying Organized: the Socio-Technical Assemblages of Personal Health Information Management, In: Computer Supported Cooperative Work (CSCW) 6(28), doi:10.1007/s10606-019-09346-z
gi.citations.elementHyang-Sook Kim, S. Shyam Sundar (2015): Motivating contributions to online forums: can locus of control moderate the effects of interface cues?, In: Health Communication 5(31), doi:10.1080/10410236.2014.981663
gi.citations.elementK. KHAIR, M. HOLLAND, S. CARRINGTON (2011): Social networking for adolescents with severe haemophilia, In: Haemophilia 3(18), doi:10.1111/j.1365-2516.2011.02689.x
gi.citations.elementJoshua Introne, Ingrid Erickson, Bryan Semaan, Sean Goggins (2019): Designing sustainable online support: Examining the effects of design change in 49 online health support communities, In: Journal of the Association for Information Science and Technology 4(71), doi:10.1002/asi.24250
gi.citations.elementShefali Haldar, Sonali R. Mishra, Maher Khelifi, Ari H. Pollack, Wanda Pratt (2017): Opportunities and Design Considerations for Peer Support in a Hospital Setting, In: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems, doi:10.1145/3025453.3026040
gi.citations.elementAyhan Durmuş (2024): The influence of digital literacy on mHealth app usability: The mediating role of patient expertise, In: DIGITAL HEALTH, doi:10.1177/20552076241299061
gi.citations.elementJordan Eschler, Wanda Pratt (2017): "I'm so glad I met you", In: Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing, doi:10.1145/2998181.2998326
gi.citations.element(2010): Computer Highlights Society Magazines, In: Computer 11(43), doi:10.1109/mc.2010.311
gi.conference.locationSanibel Island, Florida, USA

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