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

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.

Virtualizing living and working spaces: Proof of concept for a biomedical space-replication methodology.

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.

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 one's 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 program's 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.

The desktop, or the top of the desk? The relative usefulness of household features for personal health information management.

Sixty percent of the US population manages at least one chronic illness. For these patients, personal health information management (PHIM) is an integral part of daily life, and largely occurs within the home. However, the way in which the home supports PHIM has not been systematically investigated. The present study examined how members of the diabetic population use features of the home environment to support PHIM. Participants (N = 60) explored a simulated home environment, the VR CAVE, and identified the most useful features for performing three examples of PHIM tasks. The computer was perceived as the most useful feature for PHIM. However, perceived usefulness of features varied based on the PHIM task performed and the rooms in which features appeared. We conclude that a detailed study of the affordances of features is necessary to ease the burden of managing chronic illness, particularly diabetes mellitus, in the sociotechnical system of the home.

Project HealthDesign: enhancing action through information.

Project HealthDesign is a country-wide initiative in the United States designed to stimulate innovation in personal health records (PHRs). Nine grantee teams engaged in an 18-month long design and prototyping process. Two teams addressed the needs of children and adolescents; three created novel approaches to help adults prevent or manage metabolic syndrome; three groups employed interface innovations to assist patients with chronic care management and one team devised a novel calendaring system to assist patients undergoing complex medical/surgical treatments to integrate care processes into their daily lives. These projects not only included development and testing of novel personal health records applications, but also served as the starting point to specify and implement a common technical core platform. The project advanced PHR development in two key ways: intensive user-centered design and a development architecture that separates applications of PHRs from the infrastructure that supports them. The initiative also allowed systematic investigation of significant ethical, legal and social issues, including how privacy considerations are changed when information technology innovations are used in the home and the rebalancing of the authority structure of health care decision making when patient-centered approaches guide the design of PHRs.

HeartCareII: patients' use of a home care web resource.

In a six-month randomized field experiment our team evaluated the impact of a technology-enhanced practice (TEP) model compared to the usual care delivered by home care nurses. Research staff provided computers and technical assistance; home care visit nurses trained patients in the use of the components of the HeartCareII website most relevant to their care needs. The purpose of this paper is to explore participant exposure to the web-based HeartCareII resources, the technical core of the TEP. To assess exposure to the HeartCareII resources we counted logins, the number of accesses to the system, over each participant's study period. We determined that more logins occurred during the first four weeks of the participants' time in the study, with 50 percent continuing to logon after 4 weeks. The number of participants accessing the system declined during the ensuing weeks to approximately one-third at eight weeks; almost 15 percent consistently logged in throughout their 24-week course in the experiment. This pattern of exposure to such web-based resources is consistent with findings of prior studies; it may support an episodic need for health resources in the home based on changing health demands.

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.

HeartCareII: home care support for patients with chronic cardiac disease.

Systematic engagement of patients in disease management requires design and deployment of innovative technologies that complement and extend professional nursing services. We describe here a model of nursing practice that capitalizes on a web-based resource (HeartCareII) to support patient self-management, symptom interpretation, and self-monitoring. Research staff provided computers and technical assistance; visit nurses trained patients in the components of the HeartCareII Website most relevant to their care needs. This paper describes the nursing practice model and the web resource, and reports the experience of patients recruited in the early phase of the study.

Creating technology-enhanced practice: A university-home care-corporate alliance.

Insuring full benefit of consumer health informatics innovations requires integrating the technology into nursing practice, yet many valuable innovations are developed in research projects and never reach full integration. To avoid this outcome, a team of researchers partnered with a home care agency's staff and patients and their corporate parent's Information Systems and Research group to create a Technology-Enhanced Practice (TEP) designed to enhance care of home bound patients and their family care givers. The technology core of TEP, the HeartCare2 web site, was built in a collaborative process and deployed within the existing patient portal of the clinical partner. This paper describes the innovation and the experience of bringing it into full operation.

SafeHOME: Promoting Safe Transitions to the Home.

This paper introduces the SafeHome Simulator system, a set of immersive Virtual Reality Training tools and display systems to train patients in safe discharge procedures in captured environments of their actual houses. The aim is to lower patient readmission by significantly improving discharge planning and training. The SafeHOME Simulator is a project currently under review.

Health@Home Moves All About the House!

It is now well recognized that patients play an important and active role in self-care and disease management, and many of these activities happen in their homes. Information technologies to support such care might be better used if they were designed taking into account the physical context of the home and the health information management needs of the residents. We conducted home-based interviews of 20 adults including an extensive analysis of their personal health information management (PHIM) tasks. Here we present these task descriptions, locations of their performance, and distribution across space and time. Implications for the informatics community include accommodating the distributed nature of tasks in the design of consumer technologies.

vizHOME--A context-based home assessment: Preliminary implications for informatics.

The rapid migration of health care from the institution to the home presents a plethora of consumer health technology options.. The fit of these technologies to the users' actual task performance and environment remains to be explored. In the vizHOME study, we set out to conduct in-depth analyses of health information management tasks conducted by individuals residing in 20 homes in the Midwestern United States who self-reported with diabetes. This paper will explore early results from five of the 13 assessments we have performed to-date. Early observations are described and implications for informatics are posited.

Project HealthDesign: a preliminary program-level report.

Advancements in the health information technology that brought personal health records to individuals have opened the door to new insights concerning the cues people use to monitor health in their everyday lives. In order to evaluate the impact of capturing, storing, and integrating these observations of daily living (ODLs) into the clinical care process, Project HealthDesign selected five teams to create and analyze mobile health applications with ODLs in mind. These teams targeted underserved, minority populations with at least two chronic conditions. Using third-party platforms for storage, the teams were expected to bring the ODLs into the clinical workflow through the EHR. ODLs were successfully captured, interpreted and displayed; however technical and policy barriers challenge their integration outside of the mobile application. This paper serves as a preliminary, program-level report distinct from the publication of evaluation results from individual teams.

Observations of daily living: putting the "personal" in personal health records.

Keeping individuals aware of their own health is a global challenge in health care. Observations of Daily Living (ODLs), cues to health that are derived from and personally meaningful to an individual, provide a detailed picture of one's experience of health. Project HealthDesign, an 8-year initiative of the Robert Wood Johnson Foundation, is investigating ODLs and devising innovative ways of tracking them through personal health record deployment in diverse communities and health care settings. Nursing informatics knowledge base and skills, applied to the ODL challenge can accelerate their identification, capture, and interpretation, thus empowering individuals toward meaningful action and facilitating more robust information exchange between individuals and their health care providers.

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.

Project HealthDesign: stimulating the next generation of personal health records.

Project HealthDesign is a national program designed to rethink the power and potential of personal health to rethink the power and potential of personal health records. It intends to stimulate development of new personal health management tools by harnessing the content of the personal health record and making advice, recommendations, and data-tracking tools available to lay people. The program goals include creating a set of prototype personal health records applications, deriving the core functions needed to support interoperable 'plug-and-play' resources for managing health challenges, and addressing the ethical, legal, and social issues that confront the development of computer tools to promote health actions. Response to the call for proposals was tremendous; from the over 160 groups who submitted proposals, 9 teams were selected to design and create prototypes of innovative personal health management tools. This paper summarizes the full set of proposals, their populations of interest, and the technical challenges that await full implementation of the PHR-based applications designed to promote health.

Designing study nurses' training to enhance research integrity: a macroergonomic approach.

Successful field evaluation of informatics initiatives designed to create technology-enhanced professional practice relies on adequate training of experimental participants. However, such training presents design, implementation and evaluation challenges. A macroergonomic approach, focusing on an organizational view of people, technology, task and environment interactions in work systems, provides a framework for training that allows anticipation and compensation for challenges. In the HeartCare II project, we developed a multi-level training program for nurses and patients enrolled in a field trial of an innovative technology-enhanced professional practice model. Using a macroergonomic approach, we designed three waves of training centered on a train-the-trainer model. Evaluation tools for each training wave provided improvement feedback. Despite planning, a drop-off occurred between training waves, affecting both recruitment and patient training. Troubleshooting identified people, task, technology, and organizational concerns. Strategies to increase nurse buy-in and improve technical performance are making a difference. Organizational challenges remain the most intractable.

Development of an instrument to measure technology acceptance among homecare patients with heart disease.

To monitor the experience of participants in a field evaluation of a home care Web support service we developed a survey to measure patient technology acceptance. Predictors of the acceptance model were selected from the technology acceptance literature. Cognitive interviewing was used to improve the validity of the survey items. We also describe the methods used to develop the survey.