OBJECTIVES: In 2023, AMIA's Inclusive Language and Context Style Guidelines (the "Guidelines") were approved by the Board of Directors and made a publicly available resource. This work began in 2021 through AMIA's DEI Task Force and subsequent DEI Committee; many members provided input, feedback, and time to create the Guidelines. In this paper, the authors provide a transparent account of the origin, development, contents, and dissemination of the Guidelines and share plans for their future development and use. MATERIALS AND METHODS: Our approach to drafting, refining, and distributing the Guidelines included consulting existing language guides, AMIA member reviews, external expert reviews, webinars, and workshops. Through an iterative approach to drafting and refining the Guidelines, the authors consulted relevant language guidelines and many experts throughout and beyond the AMIA community. RESULTS: The Inclusive Language Context Guidelines were formally approved by the AMIA Board of Directors on February 15, 2023. The Guidelines included four principles to be considered in scientific communications: Plurality, Precision, Transparency, and Destigmatization. DISCUSSION: A moment of vulnerability where an AMIA member raised concerns about the use of harmful language during a presentation resulted in the creation of a principled approach to support inclusive language within biomedical and health informatics communications. We envision that the Guidelines will support health equity by challenging dominant public narratives around health, fostering stronger interdisciplinary collaboration and critical thinking about the impact of language, and creating a more welcoming environment for the broader AMIA community. This work could not have been completed without the support of many AMIA members and other researchers in biomedical and health informatics. The Guidelines are a living document that will continue to be updated with input and feedback from the AMIA community into the future.

Human-centered computing research has been increasingly applied to address important challenges in the health domain. Conducting research in cross-disciplinary teams can come with a lot of challenges in integrating knowledge across fields. Yet, we do not know what challenges HCI researchers encounter in building collaborations with health researchers, and how these researchers negotiate challenges while balancing their professional goals. We interviewed 17 early- and mid-career HCI faculty working in the United States who conducted research in collaboration with health researchers. Drawing from a Team Science framework, we share participants' lived experiences and identify major challenges that HCI researchers encounter when finding, collaborating with, and negotiating with health collaborators when building technologies. We propose ways to better support research collaboration aimed at designing technologies using human-centered computing approaches. This includes strategies to support HCI researchers at individual, institutional, research community, and funding agencies levels through tools to translate disciplinary approaches. We suggest institutional policies to support HCI researchers through training, networking, and promotion.

Collaborative Care Programs (CCPs) integrate mental health services into primary care settings to help patients access much needed treatment. Technologies could increase the effectiveness of CCPs, but we know little about what collaboration challenges technologies must address in this complex clinical setting. To investigate these challenges and technology opportunities, we conducted interviews and contextual inquiries with 30 patients and providers in an obstetric CCP. Using the Parallel Journeys Framework as a lens, we uncover new collaboration challenges (e.g., weighing risks and benefits of treatment, conflicting opinions and ambiguous responsibilities) at the intersection of patients' obstetric and psychosocial care journeys. We discuss new CSCW implications and technology opportunities, such as the importance of addressing support gaps in cyclical experiences, and the need to resolve provider conflicts to refocus on patient needs. These contributions inform how technologies can support patient engagement and collaboration with providers to access and receive treatment, as well as improve health outcomes.

OBJECTIVE: To elicit novel ideas for informatics solutions to support individuals through the menopausal transition. (Note: We use "individuals experiencing menopause" and "experiences" rather than "symptoms" when possible to counter typical framing of menopause as a cisgender women's medical problem.). METHODS: A participatory design study was conducted 2015-2017 in the Western US. Two sessions were held with individuals experiencing menopause recruited from the general public; and 3 sessions with healthcare practitioners (HCPs) including nurses, physicians, and complementary and integrative health (CIH) practitioners were held. Participants designed technologies addressing informational needs and burdensome experiences. HCPs reflected on designs from participants experiencing menopause. Directed content analysis was used to analyze transcripts. RESULTS: Eight individuals experiencing menopause (n = 4 each session) and 18 HCPs (n = 10 CIH, n = 3 nurses, n = 5 physicians) participated. All participants provided ideas for solution purpose, hardware, software, features and functions, and data types. Individuals experiencing menopause designed technologies to help understand and prevent burdensome menopause experiences. HCPs designed technologies for tracking and facilitating communication. Compared to nurses and physicians, CIH practitioners suggested designs reframing menopause as a positive experience and accounted for the complex lives of individuals experiencing menopause, including stigma; these ideas corresponded to comments made by participants experiencing menopause. Participants from both populations were concerned about data confidentiality and technology accessibility. CONCLUSIONS: Participant generated design ideas included novel ideas and incorporated existing technologies. This study can inform the development of new technologies or repurposing of existing technologies to support individuals through the menopausal transition.

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: 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.

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: 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.

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.

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.

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.

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.