Alongside the growing interest within HCI, and arguably computing more generally, in conducting research that has substantial societal benefits, there is a need for new ways to think about and to articulate the challenges of these engaged research projects as well as their results. Action Research (AR) is a class of methods and approaches for conducting democratic and collaborative research with community partners. AR has evolved over the last several decades and offers HCI researchers theoretical lenses, methodological approaches, and pragmatic guidance for conducting socially relevant, collaborative, and engaged research. In this article, I describe the historical context and origins of AR, the scientifically rigorous practice of conducting and evaluating AR projects, and the ways in which AR might meaningfully be applied to HCI research.

Online identities survive the deaths of those they represent, leaving friends and families to struggle with the appropriate ways to incorporate these identities into the practices of grief and mourning, raising important questions. How are practices of online memorialization connected to conventional rituals of grief and mourning? What is the role of online digital identity postmortem? How do trajectories of death and dying incorporate both online and offline concerns? Based on our qualitative study of death and mourning online, we identify the way that social networking sites enable expansion-temporally, spatially, and socially-of public mourning. Rather than looking at online practices as disruptions of traditional practices of grief and memorialization, we examine them as new sites in which public mourning takes place.

Interventions to support children with autism often include the use of visual supports, which are cognitive tools to enable learning and the production of language. Although visual supports are effective in helping to diminish many of the challenges of autism, they are difficult and time-consuming to create, distribute, and use. In this paper, we present the results of a qualitative study focused on uncovering design guidelines for interactive visual supports that would address the many challenges inherent to current tools and practices. We present three prototype systems that address these design challenges with the use of large group displays, mobile personal devices, and personal recording technologies. We also describe the interventions associated with these prototypes along with the results from two focus group discussions around the interventions. We present further design guidance for visual supports and discuss tensions inherent to their design.

BackgroundPatient-generated health data (PGHD) are health-related data created or recorded by patients to inform their self-care and understanding about their own health. PGHD is different from other patient-reported outcome data because the collection of data is patient-driven, not practice- or research-driven. Technical applications for assisting patients to collect PGHD supports self-management activities such as healthy eating and exercise and can be important for preventing and managing disease. Technological innovations (eg, activity trackers) are making it more common for people to collect PGHD, but little is known about how PGHD might be used in outpatient clinics.ObjectiveThe objective of our study was to examine the experiences of health care professionals who use PGHD in outpatient clinics.MethodsWe conducted an evaluation of Project HealthDesign Round 2 to synthesize findings from 5 studies funded to test tools designed to help patients collect PGHD and share these data with members of their health care team. We conducted semistructured interviews with 13 Project HealthDesign study team members and 12 health care professionals that participated in these studies. We used an immersion-crystallization approach to analyze data. Our findings provide important information related to health care professionals’ attitudes toward and experiences with using PGHD in a clinical setting.ResultsHealth care professionals identified 3 main benefits of PGHD accessibility in clinical settings: (1) deeper insight into a patient’s condition; (2) more accurate patient information, particularly when of clinical relevance; and (3) insight into a patient’s health between clinic visits, enabling revision of care plans for improved health goal achievement, while avoiding unnecessary clinic visits. Study participants also identified 3 areas of consideration when implementing collection and use of PGHD data in clinics: (1) developing practice workflows and protocols related to PGHD collection and use; (2) data storage, accessibility at the point of care, and privacy concerns; and (3) ease of using PGHD data.ConclusionsPGHD provides value to both patients and health care professionals. However, more research is needed to understand the benefit of using PGHD in clinical care and to identify the strategies and clinic workflow needs for optimizing these tools.

Disability studies and assistive technology are two related fields that have long shared common goals-understanding the experience of disability and identifying and addressing relevant issues. Despite these common goals, there are some important differences in what professionals in these fields consider problems, perhaps related to the lack of connection between the fields. To help bridge this gap, we review some of the key literature in disability studies. We present case studies of two research projects in assistive technology and discuss how the field of disability studies influenced that work, led us to identify new or different problems relevant to the field of assistive technology, and helped us to think in new ways about the research process and its impact on the experiences of individuals who live with disability. We also discuss how the field of disability studies has influenced our teaching and highlight some of the key publications and publication venues from which our community may want to draw more deeply in the future.

Social computing technologies, such as social networking sites (SNSs), often privilege people who fit within expected, static categories. Thus, users embarking on major identity changes, such as gender transition, often encounter stress when using SNSs to interact with their online social networks. To address this problem and reflect on the design of SNSs and other social computing systems, we present the results of a comprehensive online survey of transgender and gender non-conforming SNS users. Our findings indicate that although Facebook can be a stressful place for gender transition due to difficulties of transition disclosure, support from one's Facebook network can help to mitigate some of this stress. We examine Facebook both as a site of stress and as a site of support. Better understanding the relationships between stress, disclosure, and support on SNSs for these particular users can inform technology design that will benefit people who struggle with navigating a wide range of major identity changes online.

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Personal health records (PHR) have enormous potential to improve both documentation of health information and patient care. The adoption of these systems, however, has been relatively slow. In this work, we used a multi-method approach to evaluate PHR systems. We interviewed potential end users-clinicians and patients-and conducted evaluations with patients and caregivers as well as a heuristic evaluation with HCI experts. In these studies, we focused on three PHR systems: Google Health, Microsoft HealthVault, and WorldMedCard. Our results demonstrate that both usability concerns and socio-cultural influences are barriers to PHR adoption and use. In this paper, we present those results as well as reflect on how both PHR designers and developers might address these issues now and throughout the design cycle.