Development of a health information technology-based data system in community-based hospice and palliative care.
ABSTRACT 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.
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.
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.
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.
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.
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ABSTRACT: Abstract Background: As the role of palliative care (PC) has yet to be clearly defined in patients with heart failure (HF), such patients may face barriers regarding PC referral. In order to maximally meet the needs of HF patients, it is necessary to understand how they compare to the classic PC population: patients with cancer. Objective: To characterize the unresolved symptom and treatment needs with which patients with HF and those with cancer present to PC. Methods: We used data from the Palliative Care Research Registry (PCRR), a repository of quality improvement data from three community-based PC organizations. We abstracted first PC visit data from the PCRR for patients with primary diagnoses of HF or cancer seen between 2008 and 2012. We assessed the association of primary diagnosis (i.e., HF or cancer) on three outcomes: unresolved symptoms, treatment gaps, and a composite indicator of symptom control and quality of life. Analyses included descriptive statistics and multivariate Poisson regression. Results: Our analytic sample comprised 334 patients with HF and 697 patients with cancer, the majority of whom were white and male. Compared to patients with cancer, patients with HF presented with fewer unresolved symptoms, both overall and at moderate/severe distress levels. Patients with HF more commonly reported moderately/severely distressful dyspnea (25% versus 18%, p=0.02), and more commonly experienced dyspnea-related treatment gaps (17% versus 8%, p<0.001). Conclusions: Patients with HF possess care needs that are squarely within the purview of PC. Future work is needed to delineate how PC referral policies should be refined to optimize PC access for patients with HF.Journal of palliative medicine 03/2014; 17(4). DOI:10.1089/jpm.2013.0526 · 1.84 Impact Factor
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ABSTRACT: Abstract Background: Increasing emphasis in performance-based payment, public reporting, and quality improvement (QI) has led to widespread interest in measuring and improving the quality of care. By 2014, hospice programs will be required to report quality data to the federal government or incur financial penalties. With this increased interest in quality reporting comes an opportunity to develop informatics tools to capture data that reflect the complex practices involved in palliative care (PC). Therefore, there is a need to disseminate information on developing tools that facilitate capturing data and fostering improved performance. The Veterans Health Care Administration, a national leader in health information technology (HIT) and PC, established the Quality Improvement Resource Center (QuIRC) to develop innovative HIT tools to standardize and improve PC practices throughout the 153 Department of Veterans Affairs (VA) medical centers nationwide. Objective: The aim of the paper is to describe the development of the Palliative Care-National Clinical Template (PC-NCT) for documenting initial PC consults. Results: Domains of quality of life provided the foundation for this template. Principles of user-centered informatics design guided development activities. A national consensus panel of PC experts prioritized quality indicators as targets for QI. An interdisciplinary team of PC providers identified desired aspects of template functionality. QuIRC balanced PC providers' desired aspects of functionality against the feasibility within the VA HIT system. Formal pilot and usability testing contributed to numerous iterations of the PC-NCT currently piloted in five geographically distributed sites. Conclusion: This paper presents a robust approach to developing an informatics tool for PC practice. Data collected via the PC-NCT will bring variations in current practice into view and assist in directing resources at "important targets" for QI. Although the development of HIT tools to quantify PC practice is complex, there is enormous potential to improve the quality of care for patients and families facing serious illnesses.Journal of palliative medicine 02/2014; DOI:10.1089/jpm.2013.0288 · 1.84 Impact Factor
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ABSTRACT: Improvement methodology is based on processes to achieve quality and safety in health care in order to improve patient care, especially in management. The aim of this study was to identify differences regarding the method of estimating pain within palliative care in north-eastern Sweden. The study comprised three different data collections—questions from 22 staff members who worked in palliative care, data from the Swedish Palliative Registry, and patients’ medical records. Data were analyzed using a quantitative approach to measure the proportion of differences and similarities in everyday pain management. The two categories “Documentation of Pain Management” and “Pain Management Activities” were identified and illustrated how repeated pain management measurements contributed to a clearer view of pain management activities. The use of numbers instead of words contributed to a better, clearer, and more unified documentation of pain ratings. Use of validated rating tools regarding patients last week of life increased from 47%–100%. This study may inspire better routines to estimate pain and quantify no pain in palliative care. Evidence-based measurement tools from the patient’s perspective, can improve pain management. Keywords: documentation; espoused theory; evidence-based care; pain rating; quality improvement; theory-in-use09/2014; 2(3):205-221. DOI:10.3390/pharmacy2030205