Different roles with different goals: Designing to support shared situational awareness between patients and clinicians in the hospital.

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.

Designing Inpatient Portals to Support Patient Agency and Dynamic Hospital Experiences.

Inpatient portals could help patients engage in their hospital care, yet several design, usability, and adoption issues prevent this technology from fulfilling its potential. Despite patients having needs that extend beyond the scope of existing inpatient portals, we know less about how to design such portals that support them. To learn about effective designs, we created three mid-fidelity prototypes representing novel approaches for inpatient portal design. Then, we conducted interviews with 21 pediatric and adult inpatients to gather their feedback on these prototypes. Participants shared how the prototypes addressed the following needs: forming active partnerships, navigating relationships and power dynamics with clinicians, understanding complexity of care, contextualizing health information, increasing efficiency of communication, and preventing lost information. We discuss two key implications-supporting patients' agency and dynamic needs throughout their hospital care-for the future of inpatient portal designs.

The Value of Patient-Peer Support in Improving Hospital Safety.

Healthcare systems worldwide have dedicated several years, special attention, and action toward improving safety for their patients. Although many innovative technological solutions have helped providers reduce medical errors, hospitalized patients lack access to these solutions, and face difficulties in having a proactive role in their safety. In this paper, we examine how patient-peer support can be a valuable resource for patients in the context of hospital safety. Through semi-structured interviews with 30 patients and caregivers at a pediatric and an adult hospital, we identify the potential benefits of incorporating patient-peer support into patient-facing technologies. Facilitating such support can provide patients with new avenues for engaging in, and improving, the quality and safety of their hospital care.

Using Priorities of Hospitalized Patients and Their Caregivers to Develop Personas.

Hospitalized patients and their caregivers often access technologies like patient portals to understand what happens during their hospital stay. Although this access can lead to more patient engagement and positive health outcomes, many find that the technology does not support their needs. As a first step toward improving patient-facing technologies we create personas for hospitalized patients and their caregivers by following the Q Methodology, a technique for quantifying subjective opinion. We clustered 28 hospitalized patients' and 19 caregivers' attitudes towards receiving and managing information and working with their care team. We contribute three patient personas: patients who are (1) accommodating information seekers, (2) involved safety guardians, and (3) self-managing participators. We identify three caregiver personas: (1) cooperative information seekers, (2) vocal participators, and (3) hands-off safety guardians. These personas can inform future tools designed to support communication and information management for hospitalized patients and caregivers.

Exploring the Design of an Inpatient Peer Support Tool: Views of Adult Patients.

Despite wide recognition of the value, expertise, and support that patient-peers provide in a variety of health contexts, mechanisms to design and enable peer support in the inpatient setting have not been sufficiently explored. To better understand the opportunities for an inpatient peer support tool, we surveyed 100 adult patients and caregivers, and conducted follow-up, semi-structured interviews with 15 adult patients. In this paper, we describe five key peer support needs that our adult patient participants expressed: (1) adjusting to the hospital environment, (2) understanding and normalizing medical care, (3) communicating with providers, (4) reporting and preventing medical errors, and (5) empowering peers. In addition, we identify privacy concerns, situational impairments, and communication mode as barriers to, and preferences for, interacting with peers. Based on our findings, we discuss intelligent peer matching and aggregating peer data as design recommendations for future inpatient peer support tools.

Must We Bust the Trust?: Understanding How the Clinician-Patient Relationship Influences Patient Engagement in Safety.

Although patients desire safe care, they are reluctant to perform safety-related behaviors when they worry it could harm the relationships they have with clinicians. This influence of the clinician-patient relationship on patient engagement in safety is poorly understood, and most patient-facing safety interventions ignore its influence, focusing instead on helping patients access information about their care and report errors. We conducted semi-structured interviews with hospitalized patients to uncover their needs for patient-facing information systems that could help them prevent medical errors. We found that the clinician-patient relationship could either encourage or discourage patients and caregivers from engaging in patient safety actions. We describe our findings and discuss the implications for the design of patient-facing interventions to promote patient engagement in safety. Our findings shed light on how patient-facing safety interventions can be designed to effectively engage patients and caregivers.

Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives.

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

Design Recommendations for Pharmacogenomics Clinical Decision Support Systems.

The use of pharmacogenomics (PGx) in clinical practice still faces challenges to fully adopt genetic information in targeting drug therapy. To incorporate genetics into clinical practice, many support the use of Pharmacogenomics Clinical Decision Support Systems (PGx-CDS) for medication prescriptions. This support was fueled by new guidelines to incorporate genetics for optimizing drug dosage and reducing adverse events. In addition, the complexity of PGx led to exploring CDS outside the paradigm of the basic CDS tools embedded in commercial electronic health records. Therefore, designing the right CDS is key to unleashing the full potential of pharmacogenomics and making it a part of clinicians' daily workflow. In this work, we 1) identify challenges and barriers of the implementation of PGx-CDS in clinical settings, 2) develop a new design approach to CDS with functional characteristics that can improve the adoption of pharmacogenomics guidelines and thus patient safety, and 3) create design guidelines and recommendations for such PGx-CDS tools.

Opportunities and Design Considerations for Peer Support in a Hospital Setting.

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.

Closing the Gap: Supporting Patients' Transition to Self-Management after Hospitalization.

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.

"Not Just a Receiver": Understanding Patient Behavior in the Hospital Environment.

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.