Applying user engagement models from direct-to-patient online services to improve patient portal design

As part of Electronic Health Records (EHR) systems, patient portals can be powerful tools for patient engagement. However, most portals do not currently incorporate patient-centered design to assist patients in understanding and managing their health outside of the clinic setting. In this paper, we employ a qualitative analysis of direct-to-patient web sites that serve patients as the primary stakeholders. The web sites we analyzed present information and depict patients in ways that confer agency, offering patients a number of ways to educate themselves and seek further services. Our analysis identifies crucial design elements of such web sites that could be implemented into current patient portals to increase patient empowerment in understanding and managing their care. Ultimately, the proposed model of “active patient engagement” can empower patients to learn about their health and engage more actively in medical discourse, potentially impacting health outcomes

"This Girl is on Fire": Sensemaking in an Online Health Community for Vulvodynia

Online health communities (OHCs) allow people living with a shared diagnosis or medical condition to connect with peers for social support and advice. OHCs have been well studied in conditions like diabetes and cancer, but less is known about their role in enigmatic diseases with unknown or complex causal mechanisms. In this paper, we study one such condition: Vulvodynia, a chronic pain syndrome of the vulvar region. Through observations of and interviews with members of a vulvodynia Facebook group, we found that while the interaction types are broadly similar to those found in other OHCs, the women spent more time seeking basic information and building individualized management plans. They also encounter significant emotional and interpersonal challenges, which they discuss with each other. We use this study to extend the field's understanding of OHCs, and to propose implications for the design of self-tracking tools to support sensemaking in enigmatic conditions

Transcending Knowledge Gaps in Virtual Teams: Social Processes of Rapid Problem-Solving Bounded by Terminology

Virtual and distributed collaboration are increasingly important for organizations. This paper presents episodes of negotiated term definitions used to complete tasks in a voluntary, ad hoc game forum of an Alternate Reality Game (ARG). Episodes analyzed focus on specialized language used during problem solving. Terminology analysis reveals that players do not explicate definitions and construct shared mental models or knowledge. Instead, they transcend knowledge gaps in order to achieve action-oriented objectives. By focusing social processes on negotiated terminology for the purpose of task completion, the team rapidly meets goals

Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives

The hospital setting creates a high-stakes environment where patients' lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients' engagement in their own health care, less is known about how patients track their health and care in the hospital. Through interviews and design probes, we investigated hospitalized patients' tracking activity and analyzed our results using the stage-based personal informatics model. We used this model to understand how to support the tracking needs of hospitalized patients at each stage. In this paper, we discuss hospitalized patients' needs for collaboratively tracking their health with their care team. We suggest future extensions of the stage-based model to accommodate collaborative tracking situations, such as hospitals, where data is collected, analyzed, and acted on by multiple people. Our findings uncover new directions for HCI research and highlight ways to support patients in tracking their care and improving patient safety

Exploring Gender, Race, and Sexuality with Social Media Data

We present a full day, hands-on workshop that will provide an opportunity for researchers in our community to explore social media data and ask questions about the intersectionalities of gender, race, and sexuality. We will discuss scholarly questions and methods related to application of social media data analysis and the implications of using, presenting, and communicating results in research contexts. Workshop participants will learn how to access and analyze data using various tools and methods, drawing specifically on a Twitter dataset collected May-June 2014 during the trending hashtag #YesAllWomen. Selected participants will also present their own work to foster opportunities for targeted discussion and continued collaboration. The goals of this workshop are not only to build community but also to enable researchers to begin collecting and analyzing social media data to further their own work. The workshop emphasizes the importance of analyzing social media data ethically, respecting and engaging the sometimes vulnerable and marginalized populations who may have generated the data.ye

Designing for the Dynamic Needs of Young Adult Cancer Survivors

Thesis (Ph.D.)--University of Washington, 2017-06Young adult cancer survivors—individuals diagnosed with cancer between the ages of 18 and 39—face health and quality of life challenges long after treatment ends. Issues survivors face include forming and maintaining relationships, coping with unemployment or lack of health insurance, and struggling with lasting cancer recurrence risk or diminished fertility. Young adult survivors must cope with all of these problems while navigating health information for cancer survivors that is often written for a much older audience, and therefore lacks relevance. This growing population of health care consumers (72,000 individuals diagnosed each year, plus an estimated 600,000 young adult cancer survivors in the U.S. as of 2012) requires a more systematic approach for meeting their needs. To enhance and expand understanding of the informational and emotional needs of young adult cancer survivors, I used a combination of qualitative research methods to elicit self-characterized experiences and needs of these survivors. Working with young adult survivors, I found that their informational and emotional needs change over time, and these changes affect survivor tasks such as finding information outside the clinic, sharing stories about treatment and survivorship, and connecting with suitable cancer peers. Young adult cancer is also a uniquely social experience versus pediatric or adult cancer; survivors face a number of social risks, such as losing friends, coping with changing family dynamics, and connecting with their oncology care teams at a vulnerable time. In addition, I reflect on the combination of qualitative methods I used with participants, and point to my future work, which employs similarly creative strategies to enhance participant engagement in research. Finally, as a result of this work, I argue that better information systems and services design can lead to three powerful benefits for the young adult cancer survivor population: (1) increased survivor engagement in managing treatment and survivorship issues; (2) more effective communication between survivors and their oncology care teams; and (3) improved health outcomes through informed decision making about treatment and survivorship issues

Applying user engagement models from direct-to-patient online services to improve patient portal design

As part of Electronic Health Records (EHR) systems, patient portals can be powerful tools for patient engagement. However, most portals do not currently incorporate patient-centered design to assist patients in understanding and managing their health outside of the clinic setting. In this paper, we employ a qualitative analysis of direct-to-patient web sites that serve patients as the primary stakeholders. The web sites we analyzed present information and depict patients in ways that confer agency, offering patients a number of ways to educate themselves and seek further services. Our analysis identifies crucial design elements of such web sites that could be implemented into current patient portals to increase patient empowerment in understanding and managing their care. Ultimately, the proposed model of “active patient engagement” can empower patients to learn about their health and engage more actively in medical discourse, potentially impacting health outcomes

Design Planning for an Alternate Reality Game to Support Learning of Informatics Concepts

The project assessed approaches to creating an alternate reality game (ARG) for students to learn baseline concepts and skills of informatics in the introductory informatics course at the University of Washington Information School. The objective was to design a framework for a pilot ARG, explicitly outlining opportunities and constraints for the execution of such a game to enhance learning related to existing subjects on the course syllabus. We sought to ensure 1) instructor support for elements of the game, and 2) student participation during the game duration. We gathered information from experienced course teaching assistants and students who had taken the course previously.publishedye

“No Prejudice Here”: Examining Social Identity Work in Starter Pack Memes

As a performance venue, online social spaces afford users a variety of ways to express themselves. Many of these expressions include social identity work, such as the articulation, affirmation, or policing of a shared identity. In this study, we examine one online space in which users engage in social identity work: a Reddit forum (r/starterpacks) that primarily generates and discusses image memes of a very specific format: the “starter pack.” Users leverage these image memes to convey what we refer to in this article as prototypes of social identities. Many of these prototypical depictions are necessarily influenced by offline social groups and/or consumer culture, and are furthermore constructed around gendered, racial, or ethnic stereotypes. To understand how these image memes are used to form and perpetuate prototypes of social identities, we employed content analysis to evaluate a sample of 500 image meme artifacts created, shared, and upvoted by the subreddit’s users. We discuss the process of applying visual analysis techniques to articulate themes identified in the image meme expressions, in particular: (1) the default of the White, male identity in starter pack characterizations; (2) the production of oppressive social identities through the use of visual and textual content; and (3) the dedication to a stance of “consumption” in assembling starter pack memes, both through body politics expressed therein and use of consumer goods in images. Finally, we draw on reader response theory to frame the challenges of researchers “reading” starter pack memes, despite employing systematic methods of analysis

Self-Characterized Illness Phase and Information Needs of Participants in an Online Cancer Forum

A diagnosis of cancer is the first step on a long journey of treatment, follow-up, and maintenance or survivorship. As 5-year survivorship rates among cancer patients increase, more cancer survivors will participate in online discussion forums and support groups to assist current cancer patients through their illness. Online venues are both optimal for the exchange of patient expertise and a safe space for patients to “meet” others undergoing similar experiences. This paper presents the findings of content analysis in a general cancer forum hosted on reddit.com (r/cancer). We delineate the types of conversations found on the forum and their conceptual “shapes” (e.g., call and response of question and answer, sharing of stories), and describe connections between self-characterized cancer illness phase and stated information needs. We find that online participants posting immediately after diagnosis or during treatment tend to ask for advice; survivors are more likely to share information in the form of personal narratives; and terminal patients seek acknowledgement from the community and validation in their choices. These findings demonstrate that information systems design tailored to illness phase can expedite information finding and increase information relevance for cancer patients and survivors