<?xml version="1.0" encoding="UTF-8"?><xml><records><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>47</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Kaziunas, Elizabeth</style></author><author><style face="normal" font="default" size="100%">Ackerman, Mark S.</style></author><author><style face="normal" font="default" size="100%">Lindtner, Silvia</style></author><author><style face="normal" font="default" size="100%">Lee, Joyce M.</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Caring Through Data: Attending to the Social and Emotional Experiences of Health Datafication</style></title><secondary-title><style face="normal" font="default" size="100%">Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW&#039;17)</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">caregiving</style></keyword><keyword><style  face="normal" font="default" size="100%">chronic illness management</style></keyword><keyword><style  face="normal" font="default" size="100%">data work</style></keyword><keyword><style  face="normal" font="default" size="100%">diabetes</style></keyword><keyword><style  face="normal" font="default" size="100%">diy health</style></keyword><keyword><style  face="normal" font="default" size="100%">emotion work</style></keyword><keyword><style  face="normal" font="default" size="100%">health</style></keyword><keyword><style  face="normal" font="default" size="100%">health and wellness</style></keyword><keyword><style  face="normal" font="default" size="100%">health informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">healthcare technology</style></keyword><keyword><style  face="normal" font="default" size="100%">personal data</style></keyword><keyword><style  face="normal" font="default" size="100%">personal health informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">remote monitoring</style></keyword><keyword><style  face="normal" font="default" size="100%">self-tracking</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2017</style></year></dates><urls><web-urls><url><style face="normal" font="default" size="100%">Complete</style></url></web-urls></urls><pages><style face="normal" font="default" size="100%">2260–2272</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Designing systems to support the social context of personal data is a topic of importance in CSCW, particularly in the area of health and wellness. The relational complexities and psychological consequences of living with health data, however, are still emerging. Drawing on a 12+ month ethnography and corroborating survey data, we detail the experiences of parents using Nightscout--an open source, DIY system for remotely monitoring blood glucose data-with their children who have type one diabetes. Managing diabetes with Nightscout is a deeply relational and (at times) contested activity for parent-caregivers, whose practices reveal the tensions and vulnerabilities of caregiving work enacted through data. As engagement with personal data becomes an increasingly powerful way people experience life, our findings call for alternative data narratives that reflect a multiplicity of emotional concerns and social arrangements. We propose the analytic lens of caring-through-data as a way forward.&lt;/p&gt;</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>47</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Huh, Jina</style></author><author><style face="normal" font="default" size="100%">Mark S. Ackerman</style></author></authors></contributors><titles><title><style face="normal" font="default" size="100%">Collaborative help in chronic disease management: supporting individualized problems</style></title><secondary-title><style face="normal" font="default" size="100%">Proceedings of the ACM Conference on Computer–Supported Cooperative Work (CSCW’12)</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">diabetes</style></keyword><keyword><style  face="normal" font="default" size="100%">health informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">health information</style></keyword><keyword><style  face="normal" font="default" size="100%">QA</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2012</style></year><pub-dates><date><style  face="normal" font="default" size="100%">01/02/2012</style></date></pub-dates></dates><urls><web-urls><url><style face="normal" font="default" size="100%">Complete</style></url></web-urls></urls><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;Coping with chronic illness disease is a long and lonely journey, because the burden of managing the illness on a daily basis is placed upon the patients themselves. In this paper, we present our findings for how diabetes patient support groups help one another find individualized strategies for managing diabetes. Through field observations of face-to-face diabetes support groups, content analysis of an online diabetes community, and interviews, we found several help interactions that are critical in helping patients in finding individualized solutions. Those are: (1) patients operationalize their experiences to easily contextualize and share executable strategies; (2) operationalization has to be done within the larger context of sharing illness trajectories; and (3) the support groups develop common understanding towards diabetes management. We further discuss how our findings translate into design implications for supporting chronic illness patients in online community settings.&lt;/p&gt;
</style></abstract></record><record><source-app name="Biblio" version="7.x">Drupal-Biblio</source-app><ref-type>5</ref-type><contributors><authors><author><style face="normal" font="default" size="100%">Mark S. Ackerman</style></author><author><style face="normal" font="default" size="100%">Barbara Mirel</style></author></authors><secondary-authors><author><style face="normal" font="default" size="100%">Barbara M. Hayes</style></author><author><style face="normal" font="default" size="100%">William Aspray</style></author></secondary-authors></contributors><titles><title><style face="normal" font="default" size="100%">Designing Information to Facilitate Chronic Disease Management: Clinician-Patient Interactions in Diabetes Care</style></title><secondary-title><style face="normal" font="default" size="100%">Health Informatics: A Patient-Centered Approach to Diabetes</style></secondary-title></titles><keywords><keyword><style  face="normal" font="default" size="100%">diabetes</style></keyword><keyword><style  face="normal" font="default" size="100%">health communication</style></keyword><keyword><style  face="normal" font="default" size="100%">health informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">information access</style></keyword><keyword><style  face="normal" font="default" size="100%">medical informatics</style></keyword><keyword><style  face="normal" font="default" size="100%">patient care</style></keyword><keyword><style  face="normal" font="default" size="100%">patient information</style></keyword><keyword><style  face="normal" font="default" size="100%">support groups</style></keyword></keywords><dates><year><style  face="normal" font="default" size="100%">2010</style></year></dates><urls><web-urls><url><style face="normal" font="default" size="100%">Complete</style></url></web-urls></urls><publisher><style face="normal" font="default" size="100%">MIT Press</style></publisher><pub-location><style face="normal" font="default" size="100%">Cambridge, MA</style></pub-location><pages><style face="normal" font="default" size="100%">364-406</style></pages><language><style face="normal" font="default" size="100%">eng</style></language><abstract><style face="normal" font="default" size="100%">&lt;p&gt;This chapter examines the information needs of patients like the participants with diabetes in the observed group. This group of people had previously demonstrated receptivity to managing their diabetes for a productive life and lifestyle. As with a large proportion of patients with diabetes, however, sustaining this commitment was&lt;br&gt;difficult.&lt;/p&gt;&lt;p&gt;Similar to the complex needs of people with other chronic medical conditions, these patients’ sustained self-care was confounded by&lt;br&gt;multiple physiological conditions, emotional and psychological responses, social support needs, competing priorities, and varying&lt;br&gt;competences in communicating needs to the medical community (Klemm &amp;amp; Wheeler, 2005).&amp;nbsp; Although these patients did not need constant attention and help, and although they were self-motivated and almost entirely well educated, the information resources that are typically provided did not seem to work for them.&lt;/p&gt;&lt;p&gt;Through studying this particularly engaged and motivated group of longterm patients with diabetes, we were able to delineate critical problems that even engaged and motivated people trying to take care of a chronic disease necessarily face. Observing these participants, then, allowed us to see where standard information sources were lacking.&lt;/p&gt;&lt;p&gt;This chapter also explores what we need to understand better about content and framing in information exchanges to identify possible approaches for evoking patient responsiveness and for fostering a reflectivity-for-action that may have sustained results. As the care manager who led this group said, the purpose of the group was to provide information for future action.&amp;nbsp; Our analysis shows that these participants engaged in personalized information exchanges to understand the trade-offs and alternatives they faced.&lt;/p&gt;</style></abstract></record></records></xml>