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.

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.

Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay.

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.

"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.

Long-Term Engagement with Health-Management Technology: a Dynamic Process in Diabetes.

Diabetes management is a complex, dynamic process that is largely incumbent on patient choices and behavior. We explore how health-management needs-and the needs for technological support-change over time for individuals with diabetes. Through interviews and a focus group, we found that after initial diagnosis, individuals face acute information needs and chiefly turn to mobile applications and Internet resources to help understand the diabetes-specific factors that affect their health. Over time their focus shifts from highly regimented routines to more flexible ones that enable them to maintain a quality of life. Our results suggest that long-term engagement with health technology does not necessarily require continuous, sustained use: routine disease management could lead to a decrease in use, until a new event occurs. Our findings point to a need for tools that help patients with diabetes to effectively manage their health as their bodies, treatment and circumstances change over time.

Making background work visible: opportunities to address patient information needs in the hospital.

Despite growing use of patient-facing technologies such as patient portals to address information needs for outpatients, we understand little about how patients manage information and use information technologies in an inpatient context. Based on hospital observations and responses to an online questionnaire from previously hospitalized patients and caregivers, we describe information workspace that patients have available to them in the hospital and the information items that patients and caregivers rate as important and difficult to access or manage while hospitalized. We found that patients and caregivers desired information-such as the plan of care and the schedule of activities-that is difficult to access as needed in a hospital setting. Within this study, we describe the various tools and approaches that patients and caregivers use to help monitor their care as well as illuminate gaps in information needs not typically captured by traditional patient portals.

Understanding Design Tradeoffs for Health Technologies: A Mixed-Methods Approach.

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.

Systematic inquiry for design of health care information systems: an example of elicitation of the patient stakeholder perspective.

The electronic health record (EHR) has evolved as a tool primarily dictated by the needs of health care clinicians and organizations, providing important functions supporting day to day work in health care. However, the EHR and supporting information systems contain the potential to incorporate patient workflows and tasks as well. Integrating patient needs into existing EHR and health management systems will require understanding of patients as direct stakeholders, necessitating observation and exploration of in situ EHR use by patients to envision new opportunities for future systems. In this paper, we describe the application of a theoretical framework (Vicente, 1999) to organize qualitative data during a multi-stage research study into patient engagement with EHRs. By using this method of systematic inquiry, we have more effectively elicited patient stakeholder needs and goals to inform the design of future health care information systems.

Shared Calendars for Home Health Management.

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.

Engineering for reliability in at-home chronic disease management.

Individuals with chronic conditions face challenges with maintaining lifelong adherence to self-management activities. Although reminders can help support the cognitive demands of managing daily and future health tasks, we understand little of how they fit into people's daily lives. Utilizing a maximum variation sampling method, we interviewed and compared the experiences of 20 older adults with diabetes and 19 mothers of children with asthma to understand reminder use for at-home chronic disease management. Based on our participants' experiences, we contend that many self-management failures should be viewed as systems failures, rather than individual failures and non-compliance. Furthermore, we identify key principles from reliability engineering that both explain current behavior and suggest strategies to improve patient reminder systems.

Use of simulated physician handoffs to study cross-cover chart biopsy in the electronic medical record.

Clinical handoffs involve the rapid transfer of patient information from one provider or team to another, through activities which may introduce errors and affect care delivery. "Cross-coverage" requires quickly familiarizing oneself with unfamiliar patients whose management plans were established by another provider or team. Through this work, we describe physicians' information seeking approaches within an electronic medical record (EMR) during physician handoff and chart biopsy at a major academic medical center. We conducted simulated handoff sessions and interviews with 21 physicians using standardized patient cases and we analyzed screen capture data, and video and audio recordings of interactions with the EMR and handoff printouts. We found highly variable navigation of the EMR but greater similarity in physicians' EMR navigation behavior when the chart review was prompted by simulated interruptions. Understanding how physicians seek and assimilate patient data can inform handoff tool design and suggest strategies for explicitly supporting EMR chart biopsies.