A rationale and training agenda for rehabilitation informatics: roadmap for an emerging discipline.

Decreased length of inpatient rehabilitation stay, greater long-term injury survival rates, broader access to information technologies, and the growing role of the Internet create potential for new models of rehabilitation that are more community- and person-centered rather than historically hospital- and provider-centered services. In recent years, information-based rehabilitation technologies have grown rapidly, expanding the possibilities for numerous interventions to promote independent living. These programs have centered primarily on providing rehabilitation health services over a distance ("telerehabilitation"). Telerehabilitation can be conceived as part of a broader approach that includes elements of direct rehabilitation services, service coordination, community resources, and information relay between numerous individuals, service providers, and community members ("rehabilitation informatics"). Because of the complexity of these information types and sectors, this broader conceptual approach of rehabilitation informatics borrows heavily from fields such as adaptive computing, robotics, computer networking, and high-level systems programming. As such, innovation in rehabilitation informatics will require new models of training that span these domains. This paper proposes a rationale for the new field of rehabilitation informatics, and offers a multidisciplinary training model for the next generation of rehabilitation informaticians.

Application of peer-to-peer networking to health care.

People with chronic illness or disability share similar information needs that are not routinely handled by a system designed for traditional health services. Recent historical initiatives to provide alternate information systems for sharing information or coordinating services have been highly centralized, were expensive to set up and were not sustainable. We propose a novel application of peer-to-peer networking to provide an infrastructure for information exchange and service coordination. The peer-to-peer model empowers the user (citizen with disabilities) with control over the type and extent of information about themselves that is communicated and to whom. Further, the peer-to-peer model leads to a decentralized resource that grows incrementally, supported by the users, and is potentially more sustainable.

Development of a novel tool for engaging children and parents in asthma self-management.

This paper describes the development and evaluation of an innovative application designed to engage children and their parents in weekly asthma self-monitoring and self-management to prompt an early response to deteriorations in chronic asthma control, and to provide their physicians with longitudinal data to assess the effectiveness of asthma therapy and prompt adjustments. The evaluation included 2 iterative usability testing cycles with 6 children with asthma and 2 parents of children with asthma to assess user performance and satisfaction with the application. Several usability problems were identified and changes were made to ensure acceptability of the application and relevance of the content. This novel application is unique compared to existing asthma tools and may shift asthma care from the current reactive, acute care model to a preventive, proactive patient-centered approach where treatment decisions are tailored to patients' individual patterns of chronic asthma control to prevent acute exacerbations.

Federating clinical data from six pediatric hospitals: process and initial results from the PHIS+ Consortium.

Integrating clinical data with administrative data across disparate electronic medical record systems will help improve the internal and external validity of comparative effectiveness research. The Pediatric Health Information System (PHIS) currently collects administrative information from 43 pediatric hospital members of the Child Health Corporation of America (CHCA). Members of the Pediatric Research in Inpatient Settings (PRIS) network have partnered with CHCA and the University of Utah Biomedical Informatics Core to create an enhanced version of PHIS that includes clinical data. A specialized version of a data federation architecture from the University of Utah ("FURTHeR") is being developed to integrate the clinical data from the member hospitals into a common repository ("PHIS+") that is joined with the existing administrative data. We report here on our process for the first phase of federating lab data, and present initial results.

Sustaining compliance with pediatric asthma inpatient quality measures.

To reduce readmission risk in children hospitalized with asthma, The Joint Commission (JC) mandated hospitals to initiate preventive measures and provide patients/caregivers with a home management plan of care (HMPC) at discharge. Standard methods for recording HMPC compliance require hospitals to commit considerable resources. We developed an asthma-specific "reminder and decision support" (RADS) system to facilitate patient discharge while supporting many clinical and administrative needs, including: 1) providers' compliance with asthma preventive measures, 2) creation of patient's discharge instructions, 3) recording HMPC components for JC accreditation, and 4) creation of discharge summaries with auto-faxing mechanism to primary care providers for follow-up. RADS resulted in significant increased and sustained HMPC compliance (73% vs. 89%, p<0.01) and reduced labor time (53 vs. 15 hours/week, p=0.02) compared to standard methods. Most quality improvement interventions achieve short-term goals, but long-term improvements require decision support tools that support multiple needs while minimizing resource use.

Enhancing an existing clinical information system to improve study recruitment and census gathering efficiency.

Information technology can improve healthcare efficiency. We developed and implemented a simple and inexpensive tool, the "Automated Case Finding and Alerting System" (ACAS), using data from an existing clinical information system to facilitate identification of potentially eligible patients for clinical trials and patient encounters for billing purposes. We validated the ACAS by calculating the level of agreement in patient identification with data generated from manual identification methods. There was substantial agreement between the two methods both for clinical trial (kappa:0.84) and billing (kappa:0.97). Automated identification occurred instantaneously vs. about 2 hours/day for clinical trial and 1 hour 10 minutes/day for billing, and was inexpensive ($98.95, one time fee) compared to manual identification ($1,200/month for clinical trial and $670/month for billing). Automated identification was more efficient and cost-effective than manual identification methods. Repurposing clinical information beyond their traditional use has the potential to improve efficiency and decrease healthcare cost.

Design of a peer-to-peer telerehabilitation model.

PURPOSE: To describe the design and development process for an information network that meets the complex needs for information exchange by persons with disabilities. This paper describes the needs assessment and design processes that drove the selection of specific system features, and discusses the range of entities with whom persons with disabilities must exchange information. The authors delineate the design goals and their associated specifications for a network of local resource information that serves the needs of persons with disabilities. A model program has been specified and is currently under development. It will enable users to exchange personal, health, and resource information with service entities and with other members of the disability community who depend on detailed information to support their performance of everyday tasks. As an outcome this activity, a highly portable, replicable, sustainable, scalable, and secure model of consumer-driven information exchange will become available to persons with disabilities and to those who provide services to them. The impact of this system will be amplified when it is launched and replicated in interested communities nationwide.