Development of a Health Information Technology–Based Data System in Community-Based Hospice and Palliative Care

Abstract

Background Few hospice and palliative care organizations use health information technology (HIT) for data collection and management; the feasibility and utility of a HIT-based approach in this multi-faceted, interdisciplinary context is unclear.Purpose To develop a HIT-based data infrastructure that serves multiple hospice and palliative care sites, meeting clinical and administrative needs with data, technical, and analytic support.Methods Through a multi-site academic/community partnership, a data infrastructure was collaboratively developed, pilot-tested at a community-based site, refined, and demonstrated for data collection and preliminary analysis. Additional sites, which participated in system development, became prepared to contribute data to the growing aggregate database.Results Electronic data collection proved feasible in community-based hospice and palliative care. The project highlighted "success factors" for implementing HIT in this field: engagement of site-based project "champions" to promote the system from within; involvement of stakeholders at all levels of the organization, to promote culture change and buy-in; attention to local needs (e.g., data for quality reporting) and requirements (e.g., affordable cost, efficiency); consideration of practical factors (e.g., potential to interfere with clinical flow); provision of adequate software, technical, analytic, and statistical support; availability of flexible HIT options (e.g., different data-collection platforms); and adoption of a consortium approach in which sites can support one another, learn from each others' experiences, pool data, and benefit from economies of scale.Conclusions In hospice and palliative care, HIT-based data collection/management has potential to generate better understanding of populations and outcomes, support quality assessment/quality improvement, and prepare sites to participate in research.