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.

OBJECTIVE: Artificial Intelligence (AI)-based approaches for extracting Social Drivers of Health (SDoH) from clinical notes offer healthcare systems an efficient way to identify patients' social needs, yet we know little about the acceptability of this approach to patients and clinicians. We investigated patient and clinician acceptability through interviews. MATERIALS AND METHODS: We interviewed primary care patients experiencing social needs (n = 19) and clinicians (n = 14) about their acceptability of "SDoH autosuggest," an AI-based approach for extracting SDoH from clinical notes. We presented storyboards depicting the approach and asked participants to rate their acceptability and discuss their rationale. RESULTS: Participants rated SDoH autosuggest moderately acceptable (mean = 3.9/5 patients; mean = 3.6/5 clinicians). Patients' ratings varied across domains, with substance use rated most and employment rated least acceptable. Both groups raised concern about information integrity, actionability, impact on clinical interactions and relationships, and privacy. In addition, patients raised concern about transparency, autonomy, and potential harm, whereas clinicians raised concern about usability. DISCUSSION: Despite reporting moderate acceptability of the envisioned approach, patients and clinicians expressed multiple concerns about AI systems that extract SDoH. Participants emphasized the need for high-quality data, non-intrusive presentation methods, and clear communication strategies regarding sensitive social needs. Findings underscore the importance of engaging patients and clinicians to mitigate unintended consequences when integrating AI approaches into care. CONCLUSION: Although AI approaches like SDoH autosuggest hold promise for efficiently identifying SDoH from clinical notes, they must also account for concerns of patients and clinicians to ensure these systems are acceptable and do not undermine trust.

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.

Individuals with multiple chronic health conditions (MCC) often face an overwhelming set of self-management work, resulting in a need to set care priorities. Yet, much self-management work is invisible to healthcare providers. This study aimed to understand how to support the development and sharing of connections between personal values and self-management tasks through the facilitated use of an interactive visualization system: Conversation Canvas. We conducted a field study with 13 participants with MCC, 3 caregivers, and 7 primary care providers in Washington State. Analysis of interviews with MCC participants showed that developing visualizations of connections between personal values, self-management tasks, and health conditions helped individuals make sense of connections relevant to their health and wellbeing, recognize a road map of central issues and their impacts, feel respected and understood, share priorities with providers, and support value-aligned changes. These findings demonstrated potential for the guided process and visualization to support priorities-aligned care.

Identifying patients' social needs is a first critical step to address social determinants of health (SDoH)-the conditions in which people live, learn, work, and play that affect health. Addressing SDoH can improve health outcomes, population health, and health equity. Emerging SDoH reporting requirements call for health systems to implement efficient ways to identify and act on patients' social needs. Automatic extraction of SDoH from clinical notes within the electronic health record through natural language processing offers a promising approach. However, such automated SDoH systems could have unintended consequences for patients, related to stigma, privacy, confidentiality, and mistrust. Using Floridi et al's "AI4People" framework, we describe ethical considerations for system design and implementation that call attention to patient autonomy, beneficence, nonmaleficence, justice, and explicability. Based on our engagement of clinical and community champions in health equity work at University of Washington Medicine, we offer recommendations for integrating patient voices and needs into automated SDoH systems.

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: Lung transplant (LTx) saves lives in cystic fibrosis (CF). However, many potential candidates express uncertainty about LTx and die before receiving this treatment. CF guidelines recommend LTx education and clinical discussions well before the need for LTx arises, but limited patient resources exist. MATERIALS AND METHODS: We engaged people with CF and CF physicians in human-centered design of "Take On Transplant" (TOT), a web-based education tool to prepare patients for LTx discussions. Across 3 phases, needs assessment, design groups, and iterative user testing of TOT, we refined TOT from wireframe prototypes, to an interactive website, to a fully functional intervention ready for clinical trials. RESULTS: Fifty-five people with CF and 105 physicians identified information needs to prepare for LTx discussions. Design groups (n = 14 participants) then established core requirements: didactic education ("Resource Library"), patient narratives ("CF Stories"), frequently asked questions ("FAQ"), and self-assessment to tailor content ("My CF Stage"). Iterative usability testing (n = 39) optimized the design of CF Stories and prototype layout. We then developed the TOT website and demonstrated feasibility and preliminary efficacy of use through 2-week field testing (n = 9). DISCUSSION: Our human-centered design process provided guidance for educational tools to serve the evolving needs of potential LTx candidates. Our findings support the process of patient deliberation as a foundation for shared decision-making in CF, and inform educational tools that could potentially translate beyond LTx. CONCLUSION: TOT fills a critical gap in preparing people with CF for shared decision-making about LTx and may serve as a model for educational tools for other preference-sensitive decisions.

OBJECTIVE: Visual timelines of patient-reported outcomes (PRO) can help prostate cancer survivors manage longitudinal data, compare with population averages, and consider future trajectories. PRO visualizations are most effective when designed with deliberate consideration of users. Yet, graph literacy is often overlooked as a design constraint, particularly when users with limited graph literacy are not engaged in their development. We conducted user testing to assess comprehension, utility, and preference of longitudinal PRO visualizations designed for prostate cancer survivors with limited literacy. MATERIALS AND METHODS: Building upon our prior work co-designing longitudinal PRO visualizations with survivors, we engaged 18 prostate cancer survivors in a user study to assess 4 prototypes: Meter, Words, Comic, and Emoji. During remote sessions, we collected data on prototype comprehension (gist and verbatim), utility, and preference. RESULTS: Participants were aged 61-77 (M = 69), of whom half were African American. The majority of participants had less than a college degree (95%), had inadequate health literacy (78%), and low graph literacy (89%). Among the 4 prototypes, Meter had the best gist comprehension and was preferred. Emoji was also preferred, had the highest verbatim comprehension, and highest rated utility, including helpfulness, confidence, and satisfaction. Meter and Words both rated mid-range for utility, and Words scored lower than Emoji and Meter for comprehension. Comic had the poorest comprehension, lowest utility, and was least preferred. DISCUSSION: Findings identify design considerations for PRO visualizations, contributing to the knowledge base for visualization best practices. We describe our process to meaningfully engage patients from diverse and hard-to-reach groups for remote user testing, an important endeavor for health equity in biomedical informatics. CONCLUSION: Graph literacy is an important design consideration for PRO visualizations. Biomedical informatics researchers should be intentional in understanding user needs by involving diverse and representative individuals during development.

OBJECTIVE: Although the representation of women in science has improved, women remain underrepresented in scientific publications. This study compares women and men in scholarly dissemination through the AMIA Annual Symposium. MATERIALS AND METHODS: Through a retrospective observational study, we analyzed 2017-2020 AMIA submissions for differences in panels, papers, podium abstracts, posters, workshops, and awards for men compared with women. We assigned a label of woman or man to authors and reviewers using Genderize.io, and then compared submission and acceptance rates, performed regression analyses to evaluate the impact of the assumed gender, and performed sentiment analysis of reviewer comments. RESULTS: Of the 4687 submissions for which Genderize.io could predict man or woman based on first name, 40% were led by women and 60% were led by men. The acceptance rate was smilar. Although submission and acceptance rates for women increased over the 4 years, women-led podium abstracts, panels, and workshops were underrepresented. Men reviewers increased the odds of rejection. Men provided longer reviews and lower reviewer scores, but women provided reviews that had more positive words. DISCUSSION: Overall, our findings reflect significant gains for women in the 4 years of conference data analyzed. However, there remain opportunities to improve representation of women in workshop submissions, panel and podium abstract speakers, and balanced peer reviews. Future analyses could be strengthened by collecting gender directly from authors, including diverse genders such as non-binary. CONCLUSION: We found little evidence of major bias against women in submission, acceptance, and awards associated with the AMIA Annual Symposium from 2017 to 2020. Our study is unique because of the analysis of both authors and reviewers. The encouraging findings raise awareness of progress and remaining opportunities in biomedical informatics scientific dissemination.

OBJECTIVE: Information gaps that accompany hurricanes and floods limit researchers' ability to determine the impact of disasters on population health. Defining key use cases for sharing complex disaster data with research communities and facilitators, and barriers to doing so are key to promoting population health research for disaster recovery. MATERIALS AND METHODS: We conducted a mixed-methods needs assessment with 15 population health researchers using interviews and card sorting. Interviews examined researchers' information needs by soliciting barriers and facilitators in the context of their expertise and research practices. Card sorting ranked priority use cases for disaster preparedness. RESULTS: Seven barriers and 6 facilitators emerged from interviews. Barriers to collaborative research included process limitations, collaboration dynamics, and perception of research importance. Barriers to data and technology adoption included data gaps, limitations in information quality, transparency issues, and difficulty to learn. Facilitators to collaborative research included collaborative engagement and human resource processes. Facilitators to data and technology adoption included situation awareness, data quality considerations, adopting community standards, and attractive to learn. Card sorting prioritized 15 use cases and identified 30 additional information needs for population health research in disaster preparedness. CONCLUSIONS: Population health researchers experience barriers to collaboration and adoption of data and technology that contribute to information gaps and limit disaster preparedness. The priority use cases we identified can help address information gaps by informing the design of supportive research tools and practices for disaster preparedness. Supportive tools should include information on data collection practices, quality assurance, and education resources usable during failures in electric or telecommunications systems.

OBJECTIVE: With age, older adults experience a greater number of chronic diseases and medical visits, and an increased need to manage their health information. Technological advances in consumer health information technologies (HITs) help patients gather, track, and organize their health information within and outside of clinical settings. However, HITs have not focused on the needs of older adults and their caregivers. The goal of the SOARING (Studying Older Adults and Researching their Information Needs and Goals) Project was to understand older adult personal health information management (PHIM) needs and practices to inform the design of HITs that support older adults. MATERIALS AND METHODS: Drawing on the Work System Model, we took an ecological approach to investigate PHIM needs and practices of older adults in different residential settings. We conducted in-depth interviews and surveys with adults 60 years of age and older. RESULTS: We performed on-site in-person interview sessions with 88 generally healthy older adults in various settings including independent housing, retirement communities, assisted living, and homelessness. Our analysis revealed 5 key PHIM activities that older adults engage in: seeking, tracking, organizing, sharing health information, and emergency planning. We identified 3 major themes influencing older adults' practice of PHIM: (1) older adults are most concerned with maintaining health and preventing illness, (2) older adults frequently involve others in PHIM activities, and (3) older adults' approach to PHIM is situational and context-dependent. DISCUSSION: Older adults' approaches to PHIM are dynamic and sensitive to changes in health, social networks, personal habits, motivations, and goals. CONCLUSIONS: PHIM tools that meet the needs of older adults should accommodate the dynamic nature of aging and variations in individual, organizational, and social contexts.

People with multiple chronic conditions (MCC) need support to identify and articulate how their personal values relate to their health. We drew on previous research involving people with MCC to develop three prototypes for supporting reflection on relationships between values and health. We tested these prototypes in a qualitative study involving 12 people with MCC. We identified benefits and limitations to building on patients' existing visit-preparation practices; revealed varying levels of comfort with deep, exploratory reflection involving a facilitator; and found that reflection oriented toward the future could elicit hopeful attitudes and plans for change, while reflection on the past elicited strong resistance. We discuss these findings in relation to previous literature on designing for reflection in three areas: shifting between self-guided and facilitator-guided reflection, balancing between outcome-oriented and exploratory reflection, and exploring temporality in reflection.

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.

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.

Our research aims to develop interactive, social agents that can coach people to learn new tasks, skills, and habits. In this article, we focus on coaching sedentary, overweight individuals (i.e., “trainees”) to exercise regularly. We employ adaptive goal setting in which the intelligent health coach generates, tracks, and revises personalized exercise goals for a trainee. The goals become incrementally more difficult as the trainee progresses through the training program. Our approach is model-based—the coach maintains a parameterized model of the trainee’s aerobic capability that drives its expectation of the trainee’s performance. The model is continually revised based on trainee-coach interactions. The coach is embodied in a smartphone application, N utri W alking , which serves as a medium for coach-trainee interaction. We adopt a task-centric evaluation approach for studying the utility of the proposed algorithm in promoting regular aerobic exercise. We show that our approach can adapt the trainee program not only to several trainees with different capabilities but also to how a trainee’s capability improves as they begin to exercise more. Experts rate the goals selected by the coach better than other plausible goals, demonstrating that our approach is consistent with clinical recommendations. Further, in a 6-week observational study with sedentary participants, we show that the proposed approach helps increase exercise volume performed each week.

People with multiple chronic conditions (MCC) often disagree with healthcare providers on priorities for care, leading to worse health outcomes. To align priorities, there is a need to support patient-provider communication about what patients consider important for their well-being and health (i.e., their personal values). To address barriers to communication about values, we conducted a two-part study with key stakeholders in MCC care: patients, informal caregivers, and providers. In Part I, co-design activities generated seven dimensions that characterize stakeholders' diverse ideas for supporting communication about values: explicitness, effort, disclosure, guidance, intimacy, scale, and synchrony. In Part II, we used the dimensions to generate three design concepts and presented them in focus groups to further scrutinize findings from Part I. Based on these findings we outline directions for research and design to improve patient-provider communication about patients' personal values.

Individuals with multiple chronic conditions (MCC) experience the overwhelming burden of treating MCC and frequently disagree with their providers on priorities for care. Aligning self-care with patients' values may improve healthcare for these patients. However, patients' values are not routinely discussed in clinical conversations and patients may not actively share this information with providers. In a qualitative field study, we interviewed 15 patients in their homes to investigate techniques that encourage patients to articulate values, self-care, and how they relate. Study activities facilitated self-reflection on values and self-care and produced varying responses, including: raising consciousness, evolving perspectives, identifying misalignments, and considering changes. We discuss how our findings extend prior work on supporting reflection in HCI and inform the design of tools for improving care for people with MCC.

The eMERGE Network is establishing methods for electronic transmittal of patient genetic test results from laboratories to healthcare providers across organizational boundaries. We surveyed the capabilities and needs of different network participants, established a common transfer format, and implemented transfer mechanisms based on this format. The interfaces we created are examples of the connectivity that must be instantiated before electronic genetic and genomic clinical decision support can be effectively built at the point of care. This work serves as a case example for both standards bodies and other organizations working to build the infrastructure required to provide better electronic clinical decision support for clinicians.

Objective: Although family and friends (FF) often play a significant support role in the health of older adults (OA), we know little about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, we describe the work, needs, and barriers of FF in the context of PHIM for OAs. Methods: We conducted semi-structured telephone interviews with 52 FF identified by OA as being important in their health and PHIM. We analyzed interview transcripts for themes about FF information work, barriers, and support needs. Results: FF play a supportive role in OA health maintenance, medical encounters, decision making, and daily activities. Monitoring, the ongoing process of seeking information related to the OA status, emerged as a key activity comprised of 3 phases: detection, interpretation, and action. Barriers to monitoring included OA choices and constraints, FF constraints, and difficulty with technological tools, resources, health information exchange between providers, social network dynamics, and physical distance. Conclusions: FF frequently monitor for change in OA well-being, seeking up-to-date information to facilitate support of OA PHIM. Health information technology tools designed for FF can support all phases of monitoring by providing: (1) timely and granular levels of access to OA health information as the OA ages; (2) tailored health education for FF that is based on OA clinical data; and (3) networking platforms that integrate delegation, volunteering, and relevant resources, along with tools to facilitate support of OA appointment calendars and medication management. Such tools could reduce the burden of PHIM for OA and their loved ones.

Eliciting, understanding, and honoring patients' values- the things most important to them in daily life-is a cornerstone of patient-centered care. However, this rarely occurs explicitly as a routine part of clinical practice. This is particularly problematic for individuals with multiple chronic conditions (MCC) because they face difficult choices about how to balance competing demands for self-care in accordance with their values. In this study, we sought to inform the design of interventions to support conversations about patient values between patients with MCC and their health care providers. We conducted a field study that included observations of 21 clinic visits for patients who have MCC, and interviews with 16 care team members involved in those visits. This paper contributes a practice-based account of ways in which providers engage with patient values, and discusses how future work in interactive systems design might extend and enrich these engagements.

Individuals with multiple chronic conditions (MCC) collaborate with spousal caregivers daily to pursue what is most important to their health and well-being. Previous research in human-computer interaction has supported individuals with chronic conditions or their caregivers, but little has supported both as a unit. We conducted a field study with 12 patient-caregiver dyads, all married and living together, to identify partners' values and how they shape collaborative management of MCC. Partners' coinciding values motivated them to empathize with and support each other in the face of challenges related to health and well-being. When their values were asymmetric, they perceived tensions between individual autonomy and their ability to coordinate with their partner. These findings illustrate the rich design context of managing MCC in spousal relationships. Systems to support partners in this context could help them overcome asymmetric values, but they should balance this with support for individual autonomy.

When patients' decisions about health care priorities conflict with those of their health care providers, patients' health outcomes suffer. Patients' values for health and well-being influence their healthcare priorities, but recent work suggests that the values discussed in clinical settings do not reflect the full breadth of patients' values. To address an evidence gap regarding how discussions about values occur in clinical settings, we conducted a field study with patients with multiple chronic conditions and their health care providers, including clinical observations, interviews, and home visits. We report on the extent to which certain categories of patients' values identified in prior research were discussed in clinic visits. We then discuss how patients and providers coordinated their perspectives to establish connections among patients' values and health concerns. These findings have implications for the design of systems to support patient-provider communication to incorporate patients' values and promote concordant priorities for health care.

To improve care for the growing number of older adults with multiple chronic conditions, physicians and other healthcare providers need to better understand what is most important in the lives of these patients. In a qualitative study of home visits with patients and family caregivers, we found that patients withhold information from providers when communicating about what they deem important to their health and well-being. We examine the various motivations and factors that explain communication boundaries between patients and their healthcare providers. Patients' disclosures reflected perceptions of what was pertinent to share, assumptions about the consequences of sharing, and the influence of interpersonal relationships with providers. Our findings revealed limitations of existing approaches to support patient-provider communication and identified challenges for the design of systems that honor patient needs and preferences.

OBJECTIVE: Patient-reported outcomes (PROs) are a valued source of health information, but prior work focuses largely on data capture without guidance on visual displays that promote effective PRO use in patient-centered care. We engaged patients, providers, and design experts in human-centered design of "PRO dashboards" that illustrate trends in health-related quality of life (HRQOL) reported by patients following prostate cancer treatment. MATERIALS AND METHODS: We designed and assessed the feasibility of integrating dashboards into care in 3 steps: (1) capture PRO needs of patients and providers through focus groups and interviews; (2) iteratively build and refine a prototype dashboard; and (3) pilot test dashboards with patients and their provider during follow-up care. RESULTS: Focus groups (n = 60 patients) prioritized needs for dashboards that compared longitudinal trends in patients' HRQOL with "men like me." Of the candidate dashboard designs, 50 patients and 50 providers rated pictographs less helpful than bar charts, line graphs, or tables (P < .001) and preferred bar charts and line graphs most. Given these needs and the design recommendations from our Patient Advisory Board (n = 7) and design experts (n = 7), we built and refined a prototype that charts patients' HRQOL compared with age- and treatment-matched patients in personalized dashboards. Pilot testing dashboard use (n = 12 patients) improved compliance with quality indicators for prostate cancer care (P < .01). CONCLUSION: PRO dashboards are a promising approach for integrating patient-generated data into prostate cancer care. Informed by human-centered design principles, this work establishes guidance on dashboard content, tailoring, and clinical use that patients and providers find meaningful.

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.

OBJECTIVE: Clinicians' ability to use and interpret genetic information depends upon how those data are displayed in electronic health records (EHRs). There is a critical need to develop systems to effectively display genetic information in EHRs and augment clinical decision support (CDS). MATERIALS AND METHODS: The National Institutes of Health (NIH)-sponsored Clinical Sequencing Exploratory Research and Electronic Medical Records & Genomics EHR Working Groups conducted a multiphase, iterative process involving working group discussions and 2 surveys in order to determine how genetic and genomic information are currently displayed in EHRs, envision optimal uses for different types of genetic or genomic information, and prioritize areas for EHR improvement. RESULTS: There is substantial heterogeneity in how genetic information enters and is documented in EHR systems. Most institutions indicated that genetic information was displayed in multiple locations in their EHRs. Among surveyed institutions, genetic information enters the EHR through multiple laboratory sources and through clinician notes. For laboratory-based data, the source laboratory was the main determinant of the location of genetic information in the EHR. The highest priority recommendation was to address the need to implement CDS mechanisms and content for decision support for medically actionable genetic information. CONCLUSION: Heterogeneity of genetic information flow and importance of source laboratory, rather than clinical content, as a determinant of information representation are major barriers to using genetic information optimally in patient care. Greater effort to develop interoperable systems to receive and consistently display genetic and/or genomic information and alert clinicians to genomic-dependent improvements to clinical care is recommended.

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.

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.

Prototyping and evaluation combine to explore ways that an effective, integrative organization of project-related information might emerge as a by-product of a person's efforts to plan a project. The Personal Project Planner works as an extension to the file manager -- providing people with rich-text overlays to their information. Document-like project plans provide a context in which to create or reference documents, email messages, web pages, etc. that are needed to complete the plan. The user can later locate an information item such as an email message with reference to the plan (e.g., as an alternative to searching through the inbox or sent mail). Results of an interim evaluation of the Planner are very promising and suggest special directions of focus for limited available prototyping resources.