OBJECTIVES: We report on findings from a meeting convened by the American College of Medical Informatics (ACMI) to characterize aspects of the patient experience that could be improved using informatics. MATERIALS AND METHODS: The American College of Medical Informatics fellows were invited to share their experiences as patients and suggest informatics approaches that may improve the patient experience. RESULTS: We identified 4 themes: (1) getting the right care, (2) data sharing and data interoperability, (3) guiding low-cost evaluations, and (4) predictive analytics. DISCUSSION: Despite widespread adoption of health IT, patient experiences remain far from optimal. CONCLUSION: The American College of Medical Informatics fellows identified informatics approaches, applications, and research areas that have the potential to improve patient experiences with health care systems.

As large language models (LLMs) are embedded into mental health technologies, they are often framed either as tools assisting therapists or autonomous therapeutic systems. Such perspectives overlook their potential to mediate relational complexities in therapy, particularly for systemically marginalized clients. Drawing on in-depth interviews with 12 therapists and 12 marginalized clients in China, including LGBTQ+ individuals or those from other marginalized backgrounds, we identify enduring relational challenges: difficulties building trust amid institutional barriers, the burden clients carry in educating therapists about marginalized identities, and challenges sustaining authentic self-disclosure across therapy and daily life. We argue that addressing these challenges requires AI systems capable of actively mediating underlying knowledge gaps, power asymmetries, and contextual disconnects. To this end, we propose the Dynamic Boundary Mediation Framework , which reconceptualizes LLM-enhanced systems as adaptive boundary objects that shift mediating roles across therapeutic stages. The framework delineates three forms of mediation: Epistemic (reducing knowledge asymmetries), Relational (rebalancing power dynamics), and Contextual (bridging therapy-life discontinuities). This framework offers a pathway toward designing relationally accountable AI systems that center the lived realities of marginalized users and more effectively support therapeutic relationships.

Focusing on deficits in research with historically marginalized communities, such as Indigenous communities, perpetuates negative stereotypes and overlooks their strengths and resilience, contributing to mistrust and epistemic injustice. Shifting to strengths-based research approaches promotes more constructive narratives, respects Indigenous knowledge systems, and aligns with ethical frameworks emphasizing Indigenous community ownership and collaboration. We use photo elicitation to investigate values for community-level health research results dissemination with Alaska Native communities, exploring online image search as a tool for collaborative photo elicitation during the co-design ideation process. Our strengths-based approach demonstrates how our methods aid in recalling cultural values during design ideation. Using a deductive qualitative approach, we examined data through lenses of resilience, socioecological strengths, and sociocultural strengths. Cultural representations of community, health and wellness, storytelling, and research are emphasized to illustrate strengths while supporting ideation. We discuss the design implications of using image search for collaborative photo elicitation and its potential for revealing cultural strengths that may otherwise be missed.

Co-design is not merely a set of design activities, but is grounded in the belief of equitable access and input in design. However, a common assumption in co-design is that participants can use their hands, easily communicate, and are able to actively participate in a timeframe based on the researcher’s agenda. These assumptions can exclude underserved populations, including participants with motor and communication disabilities. We present Aligned Co-Design (ACD), a multi-modal, temporally flexible method grounded in communication theory and interdependent relationships. ACD requires the researcher to address their assumptions, communication, and role in co-design. We provide a proof-of-concept of ACD in practice, demonstrating multi-modal communication techniques and how those techniques align understanding and an equitable partnership in co-design. ACD achieves co-design’s theoretical commitment to establish an interdependent partnership with a currently under-represented population in co-design, adults who have motor or communication disabilities, thereby increasing equity and inclusion in co-design.

OBJECTIVE: Clinician implicit bias can impede patient-centered communication, leading to health care inequities. While the field of implicit bias education is evolving with advances in technology, clinicians' perspectives remain underexplored. This study investigated clinicians' perceptions of educational strategies to complement communication feedback technology in the implementation of an implicit bias education intervention. MATERIALS AND METHODS: We recruited primary care practitioners in remote interviews to brainstorm future technologies for improving clinician awareness of implicit bias in patient-provider communication. Participants completed an online survey in which they rated the priority of educational strategies that could complement the technology. We performed inductive-deductive thematic analysis of the interview data with Implicit Bias Recognition and Management (IBRM) domains as a priori codes and used descriptive statistics to summarize the survey data. RESULTS: Participants (n = 16) proposed how future technology could improve clinician awareness, such as recording visits to help clinicians be more self-aware of their communication; however, some providers expressed concerns regarding feedback fatigue and the potential impact of technology on reducing time spent with patients. Participants recommended incorporating feedback regularly into training, identifying organizational incentives, and debriefing with trusted colleagues and communication experts. DISCUSSION: Participants brainstormed technologies and identified educational strategies, such as discussion with a facilitator, that could promote clinician receptivity to feedback and inform IBRM approaches for clinical ambient intelligence. Yet, challenges remain to incentivizing participation for practicing clinicians, and Continuing Medical Education may be one effective approach. CONCLUSION: The proposed technologies and prioritized educational strategies have the potential to promote health equity by helping clinicians develop skills to manage implicit bias. In the future, these findings could inform IBRM interventions that leverage clinical ambient intelligence.

Women face significant challenges in seeking support for sexual and reproductive health (SRH) due to cultural taboos and microaggressions, even within supposedly safe online spaces. This study focuses on unmarried South Korean women who encounter these difficulties and often risk detrimental health outcomes by avoiding timely care. To investigate how to create safer and more supportive spaces for these women, we designed a 9-week study using the Asynchronous Remote Communities method for 26 unmarried Korean women participants. We created structured and unstructured activities to encourage sharing SRH narratives, which led to increased mutual support and understanding among participants. Additionally, we designed educational and reflective interventions that helped participants recognize the nuances and harms of microaggressions. This increased awareness promoted self-reflection and supportive actions among participants. Our approach demonstrates the potential to create supportive, reflective online spaces for people from marginalized communities who face stigmatized healthcare challenges. We hope our research inspires the development of more inclusive online spaces, driving positive social change in stigmatized healthcare support.

Healthcare providers' implicit bias, based on patients' physical characteristics and perceived identities, negatively impacts healthcare access, care quality, and outcomes. Feedback tools are needed to help providers identify and learn from their biases. To incorporate providers' perspectives on the most effective ways to present such feedback, we conducted semi-structured design critique sessions with 24 primary care providers. We found that providers seek feedback designed with transparent metrics indicating the quality of their communication with a patient and trends in communication patterns across visits. Based on these metrics and trends, providers want this feedback presented in a dashboard paired with actionable, personalized tips about how to improve their communication behaviors. Our study provides new insights for interactive systems to help mitigate the impact of implicit biases in patient-provider communication. New systems that build upon these insights could support providers in making healthcare more equitable, particularly for patients from marginalized communities.

Patient-provider communication influences patient health outcomes, and analyzing such communication could help providers identify opportunities for improvement, leading to better care. Interpersonal communication can be assessed through "social-signals" expressed in non-verbal, vocal behaviors like interruptions, turn-taking, and pitch. To automate this assessment, we introduce a machine-learning pipeline that ingests audio-streams of conversations and tracks the magnitude of four social-signals: dominance, interactivity, engagement, and warmth. This pipeline is embedded into ConverSense, a web-application for providers to visualize their communication patterns, both within and across visits. Our user study with 5 clinicians and 10 patient visits demonstrates ConverSense's potential to provide feedback on communication challenges, as well as the need for this feedback to be contextualized within the specific underlying visit and patient interaction. Through this novel approach that uses data-driven self-reflection, ConverSense can help providers improve their communication with patients to deliver improved quality of care.

Youth who undergo a kidney transplant can experience a fluctuation of successes and challenges throughout their chronic illness journey. Designing to capture their journey could help youth to reflect on their experiences, collaborate on their care, and be empowered to live their lives to the fullest. We interviewed 11 youth kidney transplant patients and 12 caregivers to elicit their transplant journey experiences. We found that probing participants about specific parts of their transplant journey gave them structure to tell us rich stories about their experiences. Based on our findings, we discuss informing the design of a tool to support the capturing of stories for youth with chronic illnesses. Designing such tool could help youth and their caregivers to identify barriers, support reflection, and promote self-efficacy. Youth with chronic illnesses already have to change so many aspects of their lives to accommodate their illness, however, by giving them a platform to capture their chronic illness journey, it could encourage them to take more control of their lives and better collaborate with others.

Today’s youth face many mental health challenges and are increasingly represented in psychiatric hospitalizations. Scholars have sought to understand social media’s role in mental health issues, but limited work has explored TikTok—the video-centric social media platform that is popular with youth—and people’s connections around psychiatric hospitalization experiences. In this study, we used qualitative content analysis to examine a random sample of 140 TikTok posts related to psychiatric hospitalization. We found that members of this population frequently utilize humor to create and maintain a positive and supportive community with each other. We also describe how TikTok’s design affords these interactions among community members, and conclude with a series of provocations for researchers and designers working at the intersections of social media and mental illness. We hope our study provides insights for how to further support rather than just censor youth in using creative outlets to connect with each other.

OBJECTIVE: People who experience marginalization, including Black, Indigenous, People of Color (BIPOC) and Lesbian, Gay, Bisexual, Transgender, Queer, Plus (ie, all other marginalized genders and sexual orientations) people (LGBTQ+) experience discrimination during healthcare interactions, which negatively impacts patient-provider communication and care. Yet, scarce research examines the lived experience of unfair treatment among patients from marginalized groups to guide patient-centered tools that improve healthcare equity. MATERIALS AND METHODS: We interviewed 25 BIPOC and/or LGBTQ+ people about their experiences of unfair treatment and discrimination when visiting healthcare providers. Through thematic analysis, we describe participants' immediate reactions and longer-term consequences of those experiences. RESULTS: We identified 4 ways that participants reacted to discrimination in the moment: Fighting, Fleeing, Excusing, and Working Around Bias. Long-term consequences reflect 6 ways they coped: Delaying or Avoiding Care, Changing Healthcare Providers, Self-prescribing, Covering Behaviors, Experiencing Health Complications, and Mistrusting Healthcare Institutions. DISCUSSION: By describing how patients react to experiences of unfair treatment and discrimination, our findings enhance the understanding of health disparities as patients cope and struggle to speak out.To combat these problems, we identify 3 future directions for informatics interventions that improve provider behavior, support patient advocacy, and address power dynamics in healthcare. CONCLUSIONS: BIPOC and LGBTQ+ patients' perspectives on navigating unfair treatment and discrimination in healthcare offers critical insight into their experiences and long-term consequences of those experiences. Understanding the circumstances and consequences of unfair treatment, discrimination, and the impact of bias through this patient-centered lens is crucial to inform informatics technologies that promote health equity.

OBJECTIVE: We explore the telehealth experiences of adults who use augmentative and alternative communication (AAC) and clinicians who work with people using AAC. MATERIALS AND METHODS: We conducted semistructured, online interviews with 6 adults who use AAC and 8 clinicians who provide telehealth services to people who use AAC between July and September 2020. Participants were located in the United States and the United Kingdom. All participants had engaged in 2 or more telehealth visits in the past 6 months. We used an inductive, thematic approach to analyze the interview data. RESULTS: Our findings reveal that (1) telehealth is an essential service, (2) technology causes barriers, (3) policies meant to protect actually inhibit, and (4) remote monitoring devices have the potential to mitigate risks. DISCUSSION: Telehealth systems created for persons without disabilities do not provide equitable access to everyone. Telehealth should be flexible enough to allow patients to use the communication modality that best meets their needs. We suggest that healthcare systems think of the healthcare ecosystem as one which includes a variety of telehealth options in addition to traditional in-person clinical visits. CONCLUSIONS: The benefits of telehealth for people who use AAC are substantial and should be an option for ongoing health care. However, the accessibility of telehealth technologies needs to be improved. Designers should view telehealth as part of a broad healthcare ecosystem, which includes in-person, telehealth, and remote health monitoring technologies. Designers should also include AAC users in the design and development process. Telehealth policies should encourage multimodality access to health care and address funding concerns.

Investment in medical research continues to grow; however, the sex and gender gap of health outcomes persists1,2 with poor support for the health of cisgender and transgender women,3–5 intersex people,6 and all gender-diverse people (ie, people whose gender identity and sex assigned at birth do not fully align). Informatics approaches have the potential to identify, address, and mitigate these disparities. For example, methods that elucidate the impact of sex as a biological variable, clinical decision support (CDS) systems, and personal health informatics tools are needed to specifically fit the needs of women, intersex people, and all gender-diverse people. The goal of this issue is to highlight such informatics research. Included in this issue are 19 outstanding articles that focus on 4 key areas including gender disparities, gender diversity, maternal health, and sex differences (Table 1). The majority of these articles were focused in the clinical informatics domain with 13 clinical informatics papers. The remaining 6 papers were from the fields of consumer health informatics (N = 4) and translational informatics (N = 2). We also organized the included articles by sex- and gender-related health themes focusing on 4 areas: gender disparities, gender diversity, maternal health, and sex differences. Interestingly, the majority of the consumer health informatics papers (3 out of the 4 included in this issue) were studying gender disparities. No consumer health informatics papers focused on maternal health, and therefore, this could be an area that warrants further investigation.

OBJECTIVE: The purpose of this study was to demonstrate how analyzing social media posts can uncover microaggressions and generate new cultural insights. We explore why Korean women hesitate to seek recommended gynecological care and how microaggressions visible in social media reveal insights for counteracting such harmful messaging. MATERIALS AND METHODS: We scraped the posts and responses on social media related to unmarried women's uncomfortableness or unpleasantness in receiving gynecological care. We conducted content analyses of the posts and responses with the microaggression framework to identify both the types of microaggressions occurring within and outside the clinic as well as the responsible perpetrators. With an open-coding and subsequent deductive coding approach, we further investigated the socio-cultural context for receiving gynecological care as an unmarried woman in South Korea. RESULTS: Our analysis uncovered that mothers, male partners, and superficially supportive social media responders contribute to pre- and post-visit microaggressions toward unmarried women seeking gynecological care whereas healthcare providers contribute to only mid-visit microaggressions. We also exposed how social media was not only revealing but also reinforcing the suppression of women's health care. DISCUSSION: Mid-visit microaggressions are currently addressed by cultural competence education, but pre- and post-visit microaggressions are overlooked. We uncover the gaps in current practices of informatics and public health methods and suggest ways to counteract online and offline microaggressions. CONCLUSIONS: Social media provides valuable information about the cultural context of health care and should be used as a source of insights for targeted interventions to improve health care, in this case for unmarried Korean women.

OBJECTIVE: Team situational awareness helps to ensure high-quality care and prevent errors in the complex hospital environment. Although extensive work has examined factors that contribute to breakdowns in situational awareness among clinicians, patients' and caregivers' roles have been neglected. To address this gap, we studied team-based situational awareness from the perspective of patients and their caregivers. MATERIALS AND METHODS: We utilized a mixed-methods approach, including card sorting and semi-structured interviews with hospitalized patients and their caregivers at a pediatric hospital and an adult hospital. We analyzed the results utilizing the situational awareness (SA) theoretical framework, which identifies 3 distinct stages: (1) perception of a signal, (2) comprehension of what the signal means, and (3) projection of what will happen as a result of the signal. RESULTS: A total of 28 patients and 19 caregivers across the 2 sites participated in the study. Our analysis uncovered how team SA helps patients and caregivers ensure that their values are heard, their autonomy is supported, and their clinical outcomes are the best possible. In addition, our participants described both barriers-such as challenges with communication-and enablers to facilitating shared SA in the hospital. DISCUSSION: Patients and caregivers possess critical knowledge, expertise, and values required to ensure successful and accurate team SA. Therefore, hospitals need to incorporate tools that facilitate patients and caregivers as key team members for effective SA. CONCLUSIONS: Elevating patients and caregivers from passive recipients to equal contributors and members of the healthcare team will improve SA and ensure the best possible outcomes.

OBJECTIVE: We aimed to iteratively refine an implementation model for managing cloud-based longitudinal care plans (LCPs) for children with medical complexity (CMC). MATERIALS AND METHODS: We conducted iterative 1-on-1 design sessions with CMC caregivers (ie, parents/legal guardians) and providers between August 2017 and March 2019. During audio-recorded sessions, we asked participants to walk through role-specific scenarios of how they would create, review, and edit an LCP using a cloud-based prototype, which we concurrently developed. Between sessions, we reviewed audio recordings to identify strategies that would mitigate barriers that participants reported relating to 4 processes for managing LCPs: (1) taking ownership, (2) sharing, (3) reviewing, and (4) editing. Analysis informed iterative implementation model revisions. RESULTS: We conducted 30 design sessions, with 10 caregivers and 20 providers. Participants emphasized that cloud-based LCPs required a team of owners: the caregiver(s), a caregiver-designated clinician, and a care coordinator. Permission settings would need to include universal accessibility for emergency providers, team-level permission options, and some editing restrictions for caregivers. Notifications to review and edit the LCP should be sent to team members before and after clinic visits and after hospital encounters. Mitigating double documentation barriers would require alignment of data fields between the LCP and electronic health record to maximize interoperability. DISCUSSION: These findings provide a model for how we may leverage emerging Health Insurance Portability and Accountability Act-compliant cloud computing technologies to support families and providers in comanaging health information for CMC. CONCLUSIONS: Utilizing these management strategies when implementing cloud-based LCPs has the potential to improve team-based care across settings.

To increase patient engagement and facilitate patient-provider collaboration, tools that incorporate patients' goals into medical care plans are needed. However, few studies have explored how hospitalized patients set and share goals to communicate with their caregivers and clinical care teams. Even less is known for how pediatric patients experience sharing their goals during hospitalization. This paper presents a technology probe study to characterize how pediatric patients perceive goal-setting, and how goal-sharing affects their collaboration with their caregivers and clinical care teams. We conducted this study with 13 patient families and 4 clinicians. We found that goals set and shared by pediatric patients foster the patients' autonomy to participate in care decision-making, reveal the gaps of understanding between patients and caregivers, support the patients emotionally during patient and care team interaction, and convey the patients' personalities and preferences to the clinical care team. In addition, we recommend design opportunities to support the different ways that patients' goals can foster high-quality patient care. We also discuss how patients' goals impact the tension of shared decisional authority between patients and caregivers, and how goals support pediatric patients transition to self-care.

OBJECTIVE: To determine the content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with medical complexity (CMC) in acute care settings. MATERIALS AND METHODS: We conducted iterative one-on-one design sessions with CMC caregivers (ie, parents/legal guardians) and providers from 5 groups: complex care, primary care, subspecialists, emergency care, and care coordinators. Audio-recorded sessions included content categorization activities, drawing exercises, and scenario-based testing of an electronic LCP prototype. We applied inductive content analysis of session materials to elicit content priorities and design preferences between sessions. Analysis informed iterative prototype revisions. RESULTS: We conducted 30 design sessions (10 with caregivers, 20 with providers). Caregivers expressed high within-group variability in their content priorities compared to provider groups. Emergency providers had the most unique content priorities among clinicians. We identified 6 key design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology. DISCUSSION: Findings from this study will inform enhancements of electronic health record-embedded LCPs and the development of new LCP tools and applications. The design preferences we identified provide a framework for optimizing integration of family and provider content priorities while maintaining a user-tailored experience. CONCLUSION: Health information platforms that incorporate these design preferences into electronic LCPs will help meet the information needs of caregivers and providers caring for CMC in acute care settings.

OBJECTIVE: Although patient-peer support technologies have demonstrated effectiveness in a variety of health contexts-including diabetes, weight loss, and cancer-less is known about how hospitalized patients can benefit from this support. We investigated the nature of peer support in the hospital and the impact this support had on patients' hospital stays. MATERIALS AND METHODS: We created a technology, resembling an online health community, in which patients could exchange advice about their hospitalization. We deployed it at 1 pediatric hospital and 1 adult hospital. With 30 participants, we conducted bedside interviews, observed how they used the technology during their hospitalization, and completed follow-up phone interviews. RESULTS: Participants shared advice about several topics, including adjusting to the hospital and building relationships with providers. Contrary to concerns that such a system would primarily serve as a place for patients to "complain," sentiment analysis showed that 23 of 36 (64%) of the shared advice reflected positive sentiment. Patients also reported positive impacts to their quality, safety, and hospital experience due to the inpatient peer support community. DISCUSSION: Participants benefited from peer support that transcended diagnoses and individual health conditions. The shared experience of being in the hospital was sufficient to yield valuable and practical peer support. Participants who did not contribute their own advice still experienced benefits from reading their peers' advice. CONCLUSIONS: Our study demonstrated the positive nature of peer advice exchanged, and the benefits of this advice on patients' hospital stays. Inpatient peer support technologies could be an additional resource for patients to engage in their care.

OBJECTIVE: Inpatients could play an important role in identifying, preventing, and reporting problems in the quality and safety of their care. To support them effectively in that role, informatics solutions must align with their experiences. Thus, we set out to understand how inpatients experience undesirable events (UEs) and to surface opportunities for those informatics solutions. MATERIALS AND METHODS: We conducted a survey with 242 patients and caregivers during their hospital stay, asking open-ended questions about their experiences with UEs. Based on our qualitative analysis, we developed a conceptual model representing their experiences and identified informatics opportunities to support patients. RESULTS: Our 4-stage conceptual model illustrates inpatient experiences, from when they first encounter UEs, when they could intervene, when harms emerge, what types of harms they experience, and what they do in response to harms. DISCUSSION: Existing informatics solutions address the first stage of inpatients' experiences by increasing their awareness of potential UEs. However, future researchers can explore new opportunities to fill gaps in support that patients experience in subsequent stages, especially at critical decision points such as intervening in UEs and responding to harms that occur. CONCLUSIONS: Our conceptual model reveals the complex inpatient experiences with UEs, and opportunities for new informatics solutions to support them at all stages of their experience. Investigating these new opportunities could promote inpatients' participation and engagement in the quality and safety of their care, help healthcare systems learn from inpatients' experience, and reduce these harmful events.

Although peer support technologies are critical resources for patients managing health conditions, they do not address the needs of patients in the hospital (i.e., inpatients) or the unique design constraints of this healthcare setting. To examine how the design of these technologies can meet the needs of inpatients, we conducted a technology probe study with 30 pediatric and adult inpatients. We created the Patient Advice System (PAS) to enable peer support in the hospital setting, then studied how participants used and perceived it during their stay. Inpatients used the PAS to exchange emotional support and share peer advice on a range of topics (e.g., adjusting to the hospital, communicating with providers). They identified several benefits (e.g., fostered connections) and challenges (e.g., competing clinical priorities) with using the PAS in the real-world context of their hospital stay. Based on our findings, we discuss three design opportunities-highlighting local expertise, designing for dynamic engagement, and providing alternative modes of peer support-for future peer support technologies to empower inpatients and overcome the difficulties they face within the hospital.

Although patient portals-technologies that give patients access to their health information-are recognized as key to increasing patient engagement, we have a limited understanding of how these technologies should be designed to meet the needs of hospitalized patients and caregivers. Through semi-structured interviews with 30 patients and caregivers, we examine how future patient portals can best align with their needs and support engagement in their care. Our findings reveal six needs that existing patient portals do not support: (1) transitioning from home to hospital, (2) adjusting schedules and receiving status updates, (3) understanding and remembering care, (4) asking questions and flagging problems, (5) collaborating with providers and care- givers, and (6) preparing for discharge and at-home care. Based on these findings, we discuss three design implications: highlight patient-centric goals and preferences, provide dynamic information about care events, and design for situationally-impaired users. Our contributions guide future patient portals in engaging hospitalized patients and care- givers as primary stakeholders in their health care.

Wikipedia is one of the most successful online communities in history, yet it struggles to attract and retain women editors-a phenomenon known as the gender gap. We investigate this gap by focusing on the voices of experienced women Wikipedians. In this interview-based study (N=25), we identify a core theme among these voices: safety. We reveal how our participants perceive safety within their community, how they manage their safety both conceptually and physically, and how they act on this understanding to create safe spaces on and off Wikipedia. Our analysis shows Wikipedia functions as both a multidimensional and porous space encompassing a spectrum of safety. Navigating this space requires these women to employ sophisticated tactics related to identity management, boundary management, and emotion work. We conclude with a set of provocations to spur the design of future online environments that encourage equity, inclusivity, and safety for historically marginalized users.

Personal technologies are rarely designed to be accessible to disabled people, partly due to the perceived challenge of including disability in design. Through design workshops, we addressed this challenge by infusing user-centered design activities with Design for Social Accessibility-a perspective emphasizing social aspects of accessibility-to investigate how professional designers can leverage social factors to include accessibility in design. We focused on how professional designers incorporated Design for Social Accessibility's three tenets: (1) to work with users with and without visual impairments; (2) to consider social and functional factors; (3) to employ tools-a framework and method cards-to raise awareness and prompt reflection on social aspects toward accessible design. We then interviewed designers about their workshop experiences. We found DSA to be an effective set of tools and strategies incorporating social/functional and non/disabled perspectives that helped designers create accessible design.

Historically, tattoos have been perceived as a mark of deviant behavior from the perspective of Western medicine. However, cancer survivor tattoos are one of many strategies used to recover from the trauma of cancer diagnosis and treatment. In this study, we seek to understand the significance of these tattoos in the context of survivorship. We interviewed 19 cancer survivors about their survivor tattoos, exploring the benefits of designing, discussing, and displaying these tattoos as elements of emotional recovery post-cancer. We found that the act of designing a survivor tattoo facilitated all three elements of post-traumatic growth processes, including: (1) changed self-perception; (2) changed sense of relationships with others; and (3) changed philosophy of life. Through participants' lived experiences, we discuss information about emotions, health, and recovery encoded in tattoos, and provide implications for tools to help future cancer survivors recover from the trauma of diagnosis and treatment.

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.

Talk therapy is a common, effective, and desirable form of mental health treatment. Yet, it is inaccessible to many people. Enabling peers to chat online using effective principles of talk therapy could help scale this form of mental health care. To understand how such chats could be designed, we conducted a two-week field experiment with 40 people experiencing mental illnesses comparing two types of online chats-chats guided by prompts, and unguided chats. Results show that anxiety was significantly reduced from pre-test to post-test. User feedback revealed that guided chats provided solutions to problems and new perspectives, and were perceived as "deep," while unguided chats offered personal connection on shared experiences and were experienced as "smooth." We contribute the design of an online guided chat tool and insights into the design of peer support chat systems that guide users to initiate, maintain, and reciprocate emotional support.

Although research has demonstrated improved outcomes for outpatients who receive peer support-such as through online health communities, support groups, and mentoring systems-hospitalized patients have few mechanisms to receive such valuable support. To explore the opportunities for a hospital-based peer support system, we administered a survey to 146 pediatric patients and caregivers, and conducted semi-structured interviews with twelve patients and three caregivers in a children's hospital. Our analysis revealed that hospitalized individuals need peer support for five key purposes: (1) to ask about medical details-such as procedures, treatments, and medications; (2) to learn about healthcare providers; (3) to report and prevent medical errors; (4) to exchange emotional support; and (5) to manage their time in the hospital. In this paper, we examine these themes and describe potential barriers to using a hospital-based peer support system. We then discuss the unique opportunities and challenges that the hospital environment presents when designing for peer support in this setting.

Young adult cancer survivors-individuals in their 20's and 30's-must cope with complicated informational and emotional needs that differ from those of other age groups. Although young adult cancer survivors are resourceful in finding information and support to help meet those needs, they face three distinct, ongoing challenges during and after the cancer experience: (1) feeling isolated; (2) confronting a sense of mortality; and (3) struggling with changing body image and identity. We present empirical findings from qualitative interviews with young adult cancer survivors that demonstrate how these challenges change throughout the illness experience, complicating a survivor's search for information and support. We also characterize the adaptive behaviors survivors employ to overcome these challenges. Given these findings, we suggest design implications for online spaces young adult survivors use to collaborate, as well as resources about privacy and self-presentation that can best support survivors in making decisions about shar-ing information.

Barriers to accessing mental health care leave the majority of people with mental illnesses without professional care. Peer support has been shown to address gaps in care, and could scale to wider audiences through technology. But technology design for mental health peer support lags far behind tools for individuals and clinicians. To identify opportunities for design, we interviewed 18 people with a diverse range of mental illnesses about their use of technology for peer support, and invited them to design technologies that could improve their experience of peer support. We found that technology could enhance peer support for mental health by: (1) matching peers on similarities beyond diagnosis; (2) enhancing accessibility; and (3) proactively mitigating risk through training and intervention. We discuss these findings in the context of the broad peer support literature, and present design opportunities for making mental health peer support tools empowering, accessible, and safe.

Patient engagement leads to better health outcomes and experiences of health care. However, existing patient engagement systems in the hospital environment focus on the passive receipt of information by patients rather than the active contribution of the patient or caregiver as a partner in their care. Through interviews with hospitalized patients and their caregivers, we identify ways that patients and caregivers actively participate in their care. We describe the different roles patients and caregivers assume in interacting with their hospital care team. We then discuss how systems designed to support patient engagement in the hospital setting can promote active participation and help patients achieve better outcomes.

Patients going home after a hospitalization face many challenges. This transition period exposes patients to unnecessary risks related to inadequate preparation prior to leaving the hospital, potentially leading to errors and patient harm. Although patients engaging in self-management have better health outcomes and increased self-efficacy, little is known about the processes in place to support and develop these skills for patients leaving the hospital. Through qualitative interviews and observations of 28 patients during and after their hospitalizations, we explore the challenges they face transitioning from hospital care to self-management. We identify three key elements in this process: knowledge, resources, and self-efficacy. We describe how both system and individual factors contribute to breakdowns leading to ineffective patient management. This work expands our understanding of the unique challenges faced by patients during this difficult transition and uncovers important design opportunities for supporting crucial yet unmet patient needs.

Informal caregivers, such as close friends and family, play an important role in a hospital patient's care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers' role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients' care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.

OBJECTIVE: Online health communities offer a diverse peer support base, yet users can struggle to identify suitable peer mentors as these communities grow. To facilitate mentoring connections, we designed a peer-matching system that automatically profiles and recommends peer mentors to mentees based on person-generated health data (PGHD). This study examined the profile characteristics that mentees value when choosing a peer mentor. MATERIALS AND METHODS: Through a mixed-methods user study, in which cancer patients and caregivers evaluated peer mentor recommendations, we examined the relative importance of four possible profile elements: health interests, language style, demographics, and sample posts. Playing the role of mentees, the study participants ranked mentors, then rated both the likelihood that they would hypothetically contact each mentor and the helpfulness of each profile element in helping the make that decision. We analyzed the participants' ratings with linear regression and qualitatively analyzed participants' feedback for emerging themes about choosing mentors and improving profile design. RESULTS: Of the four profile elements, only sample posts were a significant predictor for the likelihood of a mentee contacting a mentor. Communication cues embedded in posts were critical for helping the participants choose a compatible mentor. Qualitative themes offer insight into the interpersonal characteristics that mentees sought in peer mentors, including being knowledgeable, sociable, and articulate. Additionally, the participants emphasized the need for streamlined profiles that minimize the time required to choose a mentor. CONCLUSION: Peer-matching systems in online health communities offer a promising approach for leveraging PGHD to connect patients. Our findings point to interpersonal communication cues embedded in PGHD that could prove critical for building mentoring relationships among the growing membership of online health communities.

OBJECTIVE: The proposed Meaningful Use Stage 3 recommendations require healthcare providers to accept patient-generated health data (PGHD) by 2017. Yet, we know little about the tensions that arise in supporting the needs of both patients and providers in this context. We sought to examine these tensions when designing a novel, patient-centered technology - mobile Post-Operative Wound Evaluator (mPOWEr) - that uses PGHD for post-discharge surgical wound monitoring. MATERIALS AND METHODS: As part of the iterative design process of mPOWEr, we conducted semistructured interviews and think-aloud sessions using mockups with surgical patients and providers. We asked participants how mPOWEr could enhance the current post-discharge process for surgical patients, then used grounded theory to develop themes related to conflicts and agreements between patients and providers. RESULTS: We identified four areas of agreement: providing contextual metadata, accessible and actionable data presentation, building on existing sociotechnical systems, and process transparency. We identified six areas of conflict, with patients preferring: more flexibility in data input, frequent data transfer, text-based communication, patient input in provider response prioritization, timely and reliable provider responses, and definitive diagnoses. DISCUSSION: We present design implications and potential solutions to the identified conflicts for each theme, illustrated using our work on mPOWEr. Our experience highlights the importance of bringing a variety of stakeholders, including patients, into the design process for PGHD applications. CONCLUSION: We have identified critical barriers to integrating PGHD into clinical care and describe design implications to help address these barriers. Our work informs future efforts to ensure the smooth integration of essential PGHD into clinical practice.

Online health communities provide a rich source of expertise from experienced patients, but uncovering “peer mentors” with shared circumstances is like finding a needle in a haystack—a problem that will escalate as these communities grow and diversify. We investigated interactive health interest profiles (HIPs) that summarize health-related terms extracted from users’ community posts. Through iterative design, we explored practical designs that accommodate differences in users’ community participation in three HIP prototypes: Text , Word Cloud, and Timeline . By comparing prototype usability with patients and design experts, we found that patients accurately used each prototype but completed some tasks faster with the Timeline HIP . Despite this advantage, patients preferred the Text HIP . Design experts and patients agreed that simple data overviews and granular details with salient cues that invite interactivity are key design considerations for HIPs. Findings offer key design considerations for HIPs that patients find most useful when forging critical connections.

We introduce a mixed-methods approach for determining how people weigh tradeoffs in values related to health and technologies for health self-management. Our approach combines interviews with Q-methodology, a method from psychology uniquely suited to quantifying opinions. We derive the framework for structured data collection and analysis for the Q-methodology from theories of self-management of chronic illness and technology adoption. To illustrate the power of this new approach, we used it in a field study of nine older adults with type 2 diabetes, and nine mothers of children with asthma. Our mixed-methods approach provides three key advantages for health design science in HCI: (1) it provides a structured health sciences theoretical framework to guide data collection and analysis; (2) it enhances the coding of unstructured data with statistical patterns of polarizing and consensus views; and (3) it empowers participants to actively weigh competing values that are most personally significant to them.

What is the role of shared calendars for home health management? Utilizing a maximum variation sampling method, we interviewed 20 adult individuals with diabetes and 20 mothers of children with asthma to understand calendar use in the context of chronic disease home health management. In comparing the experiences of these two groups, we explore participants' use of tools for organizing tasks and appointments, their strategies for capturing health and non-health events in the family calendar system, the ecology of artifacts that intersect with their scheduling tools, and the failures they experienced while managing their calendar systems. Through this work, we offer a context-specific perspective of schedule management strategies for individuals and families who must integrate their handling of chronic illnesses with everyday living.

Children diagnosed with a chronic illness, such as cancer, experience a vastly different childhood than their healthy counterparts. They may struggle with accepting that they are no longer seen as "normal". We surveyed 10 children who have a chronic illness and interviewed 15 healthcare professionals and 7 parents of chronically ill children to understand their communication practices and challenges of how these patients stay connected with their peers. We found that due to the nature of their illness and constant hospitalization, pediatric patients often use various communication technologies to stay in touch with friends and try to maintain normalcy in their lives. Some patients also had to create a "new normal" that balanced life before and after being diagnosed. Based on these results, we suggest opportunities for technology to help patients connect to others and retain a sense of normalcy or to encourage them to embrace their "new normal".

Manual tracking of health behaviors affords many benefits, including increased awareness and engagement. However, the capture burden makes long-term manual tracking challenging. In this study on sleep tracking, we examine ways to reduce the capture burden of manual tracking while leveraging its benefits. We report on the design and evaluation of SleepTight, a low-burden, self-monitoring tool that leverages the Android's widgets both to reduce the capture burden and to improve access to information. Through a four-week deployment study (N = 22), we found that participants who used SleepTight with the widgets enabled had a higher sleep diary compliance rate (92%) than participants who used SleepTight without the widgets (73%). In addition, the widgets improved information access and encouraged self-reflection. We discuss how to leverage widgets to help people collect more data and improve access to information, and more broadly, how to design successful manual self-monitoring tools that support self-reflection.

Researchers have studied how people use self-tracking technologies and discovered a long list of barriers including lack of time and motivation as well as difficulty in data integration and interpretation. Despite the barriers, an increasing number of Quantified-Selfers diligently track many kinds of data about themselves, and some of them share their best practices and mistakes through Meetup talks, blogging, and conferences. In this work, we aim to gain insights from these "extreme users," who have used existing technologies and built their own workarounds to overcome different barriers. We conducted a qualitative and quantitative analysis of 52 video recordings of Quantified Self Meetup talks to understand what they did, how they did it, and what they learned. We highlight several common pitfalls to self-tracking, including tracking too many things, not tracking triggers and context, and insufficient scientific rigor. We identify future research efforts that could help make progress toward addressing these pitfalls. We also discuss how our findings can have broad implications in designing and developing self-tracking technologies.

Many patients visit online health communities to receive support. In face-to-face support groups, health professionals facilitate peer-patients exchanging experience while adding their clinical expertise when necessary. However, the large scale of online health communities makes it challenging for such health professional moderators' involvement to happen. To address this challenge of delivering clinical expertise to where patients need them, we explore the idea of semi-automatically providing clinical expertise in online health communities. We interviewed 14 clinicians showing them example peer-patient conversation threads. From the interviews, we examined the ideal practice of clinicians providing expertise to patients. The clinicians continuously assessed when peer-patients were providing appropriate support, what kinds of clinical help they could give online, and when to defer to patients' healthcare providers. The findings inform requirements for building a semi-automated system delivering clinical expertise in online health communities.

Studies have shown positive impact of video blogs (vlogs) on patient education. However, we know little on how patient-initiated vlogs shape the relationships among vloggers and viewers. We qualitatively analyzed 72 vlogs on YouTube by users diagnosed with HIV, diabetes, or cancer and 1,274 comments posted to the vlogs to understand viewers' perspectives on the vlogs. We found that the unique video medium allowed intense and enriched personal and contextual disclosure to the viewers, leading to strong community-building activities and social support among vloggers and commenters, both informationally and emotionally. Furthermore, the unique communication structure of the vlogs allowed ad hoc small groups to form, which showed different group behavior than typical text-based social media, such as online communities. We provide implications to the Health Care Industry (HCI) community on how future technologies for health vlogs could be designed to further support chronic illness management.

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.

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.

New technologies for encouraging physical activity, healthy diet, and other types of health behavior change now frequently appear in the HCI literature. Yet, how such technologies should be evaluated within the context of HCI research remains unclear. In this paper, we argue that the obvious answer to this question - that evaluations should assess whether a technology brought about the intended change in behavior - is too limited. We propose that demonstrating behavior change is often infeasible as well as unnecessary for a meaningful contribution to HCI research, especially when in the early stages of design or when evaluating novel technologies. As an alternative, we suggest that HCI contributions should focus on efficacy evaluations that are tailored to the specific behavior-change intervention strategies (e.g., self-monitoring, conditioning) embodied in the system and studies that help gain a deep understanding of people's experiences with the technology.

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.

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.

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.

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.

Coping 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.

In this paper, we propose a new method to extract the meaning of medical concept correlations from MEDLINE abstract sentences. Our method incorporates a medical knowledge base, natural language processing approaches, and text classification methods. We describe how we automatically created the training sets and report the results of our initial experiments.

Abstract Scientists engage in the discovery process more than any other user population, yet their day‐to‐day activities are often elusive. One activity that consumes much of a scientist's time is developing models that balance contradictory and redundant evidence. Driven by our desire to understand the information behaviors of this important user group, and the behaviors of scientific discovery in general, we conducted an observational study of academic research scientists as they resolved different experimental results reported in the biomedical literature. This article is the first of two that reports our findings. In this article, we introduce the Collaborative Information Synthesis (CIS) model that reflects the salient information behaviors that we observed. The CIS model emerges from a rich collection of qualitative data including interviews, electronic recordings of meetings, meeting minutes, e‐mail communications, and extraction worksheets. Our findings suggest that scientists provide two information constructs: a hypothesis projection and context information. They also engage in four critical tasks: retrieval, extraction, verification, and analysis. The findings also suggest that science is not an individual but rather a collaborative activity and that scientists use the results of one analysis to inform new analyses. In Part 2, we compare and contrast existing information and cognitive models that have inadvertently reported synthesis, and then provide five recommendations that will enable designers to build information systems that support the important synthesis activity.

Abstract As the quantity of information continues to exceed our human processing capacity, information systems must support users as they face the daunting task of synthesizing information. One activity that consumes much of a scientist's time is developing models that balance contradictory and redundant evidence. Driven by our desire to understand the information behaviors of this important user group, and the behaviors of scientific discovery in general, we conducted an observational study of academic research scientists as they resolved different experimental results reported in the biomedical literature. This article is Part 2 of two articles that report our findings. In Part 1 (Blake & Pratt, 2006), we introduced the Collaborative Information Synthesis (CIS) model, which captures the salient information behaviors that we observed. In this article, we review existing cognitive and information seeking models that have inadvertently reported synthesis behavior and provide five recommendations for systems designers to build information systems that support synthesis activities.

The explosive growth in the biomedical literature has made it difficult for researchers to keep up with advancements, even in their own narrow specializations. In addition, this current volume of information has created barriers that prevent researchers from exploring connections to their own work from other parts of the literature. Although potentially useful connections might permeate the literature, they will remain buried without new kinds of tools to help researchers capture new knowledge that bridges gaps across distinct sections of the literature. In this paper, we present LitLinker, a system that incorporates knowledge-based methodologies, natural-language processing techniques, and a data-mining algorithm to mine the biomedical literature for new, potential causal links between biomedical terms. Our results from a well-known text-mining example show that LitLinker can capture these novel, interesting connections in an open-ended fashion, with less manual intervention than in previous systems.

Medical care involves intense collaboration amongst a number of practitioners including physicians, nurses, and pharmacists. Their work is concentrated on a single patient, and yet their activities, motivations, and concerns are very different. We explore the use of a shared information system in helping these individuals coordinate their work. In particular, we use the idea of a common information space to explore how the shared information is incorporated into the diverse work practices of an intensive care unit. In addition to physical co-location, we found that providing information in many specialised representations is critical to managing their coordination. Unlike paper records, computer systems offer the ability to decouple information from its representations. This decoupling opens up a rich design space for systems that allow people with different interests, concerns and work practices to work together effectively. These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

The choice of features used to represent a domain has a profound effect on the quality of the model produced; yet, few researchers have investigated the relationship between the features used to represent text and the quality of the final model. We explored this relationship for medical texts by comparing association rules based on features with three different semantic levels: (1) words (2) manually assigned keywords and (3) automatically selected medical concepts. Our preliminary findings indicate that bi-directional association rules based on concepts or keywords are more plausible and more useful than those based on word features. The concept and keyword representations also required 90% fewer features than the word representation. This drastic dimensionality reduction suggests that this approach is well suited to large textual corpora of medical text, such as parts of the Web.

Typically, commercial Web search engines provide very little feedback to the user concerning how a particular query is processed and interpreted. Specifically, they apply key query transformations without the users knowledge. Although these transformations have a pronounced effect on query results, users have very few resources for recognizing their existence and understanding their practical importance. We conducted a user study to gain a better understanding of users knowledge of and reactions to the operation of several query transformations that web search engines automatically employ. Additionally, we developed and evaluated Transparent Queries, a software system designed to provide users with lightweight feedback about opaque query transformations. The results of the study suggest that users do indeed have difficulties understanding the operation of query transformations without additional assistance. Finally, although transparency is helpful and valuable, interfaces that allow direct control of query transformations might ultimately be more helpful for end-users.

OBJECTIVE: The authors' goal was to determine whether dynamic categorization, a new technique for organizing search results, is more useful than the two existing organizational techniques: relevance ranking and clustering. They define a useful tool as one that helps users learn about the kinds of information that pertain to their query, find answers to their questions efficiently and easily, and feel satisfied with their search experience. DESIGN: Fifteen patients with breast cancer and their family members completed query-related tasks using all three tools. The authors measured the time it took the subjects to accomplish their tasks, the number of answers to the query that the subjects found in four minutes, and the number of new answers that they could recall at the end of the study. Subjects also completed a user-satisfaction questionnaire. RESULTS: The results showed that patients with breast cancer and their family members could find significantly (P: < 0.05) more answers in a fixed amount of time and were significantly (P: < 0.05) more satisfied with their search experience when they used the dynamic categorization tool than when they used either the cluster tool or the ranking tool. Subjects indicated that the dynamic categorization tool provided an organization of search results that was more clear, easy to use, accurate, precise, and helpful than those of the other tools. CONCLUSION: The experiments indicate that dynamic categorization is an effective and useful approach for organizing search results. Tools that use this technique will help patients and their families gain quick and easy access to important medical information.

No abstract available.