Gail R. Casper

Project HealthDesign: Rethinking the power and potential of personal health records

Project HealthDesign, a multi-year, multi-site project sponsored by the Robert Wood Johnson Foundation with additional support from the California HealthCare Foundation, is designed to stimulate innovation in personal health records (PHRs). Project HealthDesign teams employed user-centered design processes to create designs and prototypes of computer-based applications to support and enhance human health for a wide range of patients, from children with chronic health conditions to elders transitioning from hospital to home. A program design philosophy encouraged designers to envision PHRs as a suite of personal health information management tools, or applications, separate from, but drawing upon, personal health data from a variety of sources. In addition to information contained in ones medical record, these personal health data included patient-supplied clinical parameters such as blood glucose and daily weights; as well as patient-generated observations of daily living (ODLs) - the unique, idiosyncratic cues, such as sleep adequacy or confidence in self care, that inform patients about their abilities to manage health challenges and take healthy action. A common technical platform provided infrastructure services such as data standards and identity-management protocols, and helped to demonstrate a scalable, efficient approach to user-centered design of personal health information management systems. The programs ethical, legal and social issues consultancy identified challenges to acceleration of action-focused PHRs: personal control of privacy choices, management of privacy in home conditions, and rebalancing power structures in shared decision making.

Technology-Enhanced Practice for Patients With Chronic Cardiac Disease: Home Implementation and Evaluation

OBJECTIVE This 3-year field experiment engaged 60 nurses and 282 patients in the design and evaluation of an innovative home-care nursing model, referred to as technology-enhanced practice (TEP). METHODS Nurses using TEP augmented the usual care with a web-based resource (HeartCareII) that provided patients with self-management information, self-monitoring tools, and messaging services. RESULTS Patients exposed to TEP demonstrated better quality of life and self-management of chronic heart disease during the first 4 weeks, and were no more likely than patients in usual care to make unplanned visits to a clinician or hospital. Both groups demonstrated the same long-term symptom management and achievements in health status. CONCLUSION This project provides new evidence that the purposeful creation of patient-tailored web resources within a hospital portal is possible; that nurses have difficulty with modifying their practice routines, even with a highly-tailored web resource; and that the benefits of this intervention are more discernable in the early postdischarge stages of care.

Human factors and ergonomics in home care: Current concerns and future considerations for health information technology.

Sicker patients with greater care needs are being discharged to their homes to assume responsibility for their own care with fewer nurses available to aid them. This situation brings with it a host of human factors and ergonomic (HFE) concerns, both for the home care nurse and the home dwelling patient, that can affect quality of care and patient safety. Many of these concerns are related to the critical home care tasks of information access, communication, and patient self-monitoring and self-management. Currently, a variety of health information technologies (HITs) are being promoted as possible solutions to those problems, but those same technologies bring with them a new set of HFE concerns. This paper reviews the HFE considerations for information access, communication, and patients self-monitoring and self-management, discusses how HIT can potentially mitigate current problems, and explains how the design and implementation of HIT itself requires careful HFE attention.

Observing health in everyday living: ODLs and thecare-between-the-care

Abstract Creating technological solutions that support health everywhere requires understanding the context of health and the vernacular of those engaged in it within that context. Within the formal healthcare system, institutional environments dominate and perspectives of biomedical science and the health professions govern the characterization of disease, illness and related terminology. In the everyday living context, the myriad viewpoints of the person prevail within informal, highly personal environments. The words used to characterize concern the manner in which symptoms are interpreted, and even the language employed arises from one’s lived experience. In this paper, based in our work with Project HealthDesign grantee teams, we advocate for an expanded notion of the contexts of health, extending beyond hospitals and clinics to homes, workplaces and communities. We also introduce a new vernacular, observations of daily living (ODLs), a novel type of patient-generated health data that Project HealthDesign participants revealed to us. ODLs reflect feelings, thoughts, behaviors, exposures and actions; they serve as cues to healthy action and indicators of personal health states. We conclude with recommendations to the PUC community to leverage in designing tools useful for the personal, everyday context experience of health.

Virtualizing living and working spaces

The physical spaces within which the work of health occurs - the home, the intensive care unit, the emergency room, even the bedroom - influence the manner in which behaviors unfold, and may contribute to efficacy and effectiveness of health interventions. Yet the study of such complex workspaces is difficult. Health care environments are complex, chaotic workspaces that do not lend themselves to the typical assessment approaches used in other industrial settings. This paper provides two methodological advances for studying internal health care environments: a strategy to capture salient aspects of the physical environment and a suite of approaches to visualize and analyze that physical environment. We used a Faro™ laser scanner to obtain point cloud data sets of the internal aspects of home environments. The point cloud enables precise measurement, including the location of physical boundaries and object perimeters, color, and light, in an interior space that can be translated later for visualization on a variety of platforms. The work was motivated by vizHOME, a multi-year program to intensively examine the home context of personal health information management in a way that minimizes repeated, intrusive, and potentially disruptive in vivo assessments. Thus, we illustrate how to capture, process, display, and analyze point clouds using the home as a specific example of a health care environment. Our work presages a time when emerging technologies facilitate inexpensive capture and efficient management of point cloud data, thus enabling visual and analytical tools for enhanced discharge planning, new insights for designers of consumer-facing clinical informatics solutions, and a robust approach to context-based studies of health-related work environments.

Work System Analysis of Home Nursing Care and Implications for Medication Errors

The purpose of this study was to examine the context of the provision of home nursing care for patients with congestive heart failure. A modified macroergonomic analysis and design work system analysis was undertaken in two phases with fourteen nurse participants: I) field observations of eight nurses for the collection of data on work elements and II) follow-up telephone interviews with six home care nurses. Open-ended questions were asked after the observations to identify clinical knowledge, policies, and procedures that influenced care decisions and practices. The telephone interviews focused on four different aspects of home health care delivery and were conducted using semi-structured questions. Results of the observations were translated into flowcharts and a summary report. The baseline findings described aspects of home medication management and its relevance to safety, quality of care, communication, and self-management.

Introduction to theme issue on technologies for patient-defined and patient-generated data

Health reform initiatives around the world require active participation of individuals in their own health and in the health care process. Technologies designed to support engagement in health and health care provide the foundation for active participation of patients and engender a new vision of health services. This vision is grounded in a twoway exchange of information between patients and clinicians. Information, preferences, knowledge, and responsibility are shared to achieve the outcomes of the cooperative health efforts. Health and illness management both require more than the traditional, clinically derived signs and symptoms. They also require patient-generated data, including self-monitoring, tracking, and observations made in everyday living—the unique observations and insights that bring the everyday life of the person into the clinical encounter. Personal and ubiquitous technologies present opportunities to go beyond the traditional observation of signs and symptoms to include a complementary set of patient-generated data that include observations and activities that are centered in the patient’s worldview, but sometimes defined in consultation with a clinician. In summary, we characterize three types of health data as (1) clinically defined and generated, (2) clinically defined patient-generated and (3) patient-defined and generated which we call observations of daily living or ODLs. This theme issues focuses on these last two data types, and the majority of papers address the third—data that are both patient-defined and generated. We advance these distinctions to foster a more comprehensive view of a person and their health concerns and their health services. Unpacking these different data types facilitates a more complete view of a person and their health experiences. Patient-defined and patient-generated data may serve as the first point of awareness and stimuli for health action. When the data are relevant and important to the patient, but not to a clinician, the patient has the opportunity—and responsibility—to impute meaning on them. As the realization takes hold that health occurs always and everywhere, not just during a clinic visit or a hospital stay, and as patient-generated data assume a more central role in understanding and capturing an individual patient’s health state, the limits of the electronic medical record as an information platform for health emerge, and the need for newer, highly distributed nimble-but-robust information architectures becomes clearer. Achieving the goals of health for all requires full engagement in health of everyone, every day, everywhere, and this engagement, in turn, must be facilitated by knowledge and technology. The language of health care is changing, expanding to include words that reflect health-related information that enables patients to take healthy action and provides clinicians with a window into a patient’s world. Tools must be created to better support the ephemeral, idiosyncratic nature of patient-defined and patient-generated data and their episodic integration into clinical care. The challenge is twofold: (1) build tools that capture and return to the patient informative data displays, and (2) represent, package, and send these data to the clinician. Robust, powerful visualization and display strategies must be developed to accommodate the many users and uses of G. R. Casper (&) University of Wisconsin-Madison, Madison, WI, USA e-mail: gcasper@wisc.edu

Human Factors and Ergonomic Concerns and Future Considerations for Consumer Health Information Technology in Home Nursing Care

Sicker patients with greater care needs are being discharged to their homes to assume responsibility for their own care with fewer nurses available to aid them. This situation brings with it a host of human factors and ergonomic (HFE) concerns, both for the home care nurse and the home care patient, which can affect quality of care and patient safety. Many of these concerns are related to the critical home care tasks of information access, communication, and patient self-management. Currently, a variety of consumer health information technologies (CHITs) are being promoted as possible solutions to those problems, but those same technologies bring with them a new set of HFE concerns. This article reviews the HFE considerations for information access, communication, and patient self-management, discusses how CHIT can potentially mitigate current problems, and explains how the design and implementation of CHIT itself requires careful HFE attention.

Simulating the experience of home environments

Growing evidence indicates that transitioning patients are often unprepared for the self-management role they must assume when they return home. Over the past twenty five years, LiDAR scanning has emerged as a fascinating technology that allows for the rapid acquisition of three dimensional data of real world environments while new virtual reality (VR) technology allows users to experience simulated environments. However, combining these two technologies can be difficult as previous approaches to interactively rendering large point clouds have generally created a trade-off between interactivity and quality. For instance, many techniques used in commercially available software have utilized methods to sub-sample data during interaction, only showing a high-quality render when the viewpoint is kept static. Unfortunately, for displays in which viewpoints are rarely static, such as virtual reality systems, these methods are not useful. This paper presents a novel approach to the problem of quality-interactivity trade-off through a progressive feedback-driven rendering algorithm. This technique uses reprojections of past views to accelerate the reconstruction of the current view and can be used to extend existing point cloud viewing algorithms. The presented method is tested against previous methods, demonstrating marked improvements in both rendering quality and interactivity. This algorithm and rendering application could serve as a tool to enable virtual rehabilitation within 3D models of ones own home from a remote location.

Home is where the head is: a distributed cognition account of personal health information management in the home among those with chronic illness

Abstract Managing chronic illness requires personal health information management (PHIM) to be performed by lay individuals. Paramount to understanding the PHIM process is understanding the sociotechnical system in which it frequently occurs: the home environment. We combined distributed cognition theory and the patient work system model to investigate how characteristics of the home interact with the cognitive work of PHIM. We used a 3D virtual reality CAVE that enabled participants who had been diagnosed with diabetes (N = 20) to describe how they would perform PHIM in the home context. We found that PHIM is distinctly cognitive work, and rarely performed ‘in the head’. Rather, features of the physical environment, tasks, people, and tools and technologies present, continuously shape and are shaped by the PHIM process. We suggest that approaches in which the individual (sans context) is considered the relevant unit of analysis overlook the pivotal role of the environment in shaping PHIM. Practitioner Summary: We examined how Personal Health Information Management (PHIM) is performed in the homes of diabetic patients. We found that approaches to studying cognition that focus on the individual, to the exclusion of their context, overlook the pivotal role of environmental, social, and technological features in shaping PHIM.