Establishing a regional, multisite database for quality improvement and service planning in community-based palliative care and hospice.


BACKGROUND: Outpatient palliative care, an evolving delivery model, seeks to improve continuity of care across settings and to increase access to services in hospice and palliative medicine (HPM). It can provide a critical bridge between inpatient palliative care and hospice, filling the gap in community-based supportive care for patients with advanced life-limiting illness. Low capacities for data collection and quantitative research in HPM have impeded assessment of the impact of outpatient palliative care. APPROACH: In North Carolina, a regional database for community-based palliative care has been created through a unique partnership between a HPM organization and academic medical center. This database flexibly uses information technology to collect patient data, entered at the point of care (e.g., home, inpatient hospice, assisted living facility, nursing home). HPM physicians and nurse practitioners collect data; data are transferred to an academic site that assists with analyses and data management. Reports to community-based sites, based on data they provide, create a better understanding of local care quality. CURRENT STATUS: The data system was developed and implemented over a 2-year period, starting with one community-based HPM site and expanding to four. Data collection methods were collaboratively created and refined. The database continues to grow. Analyses presented herein examine data from one site and encompass 2572 visits from 970 new patients, characterizing the population, symptom profiles, and change in symptoms after intervention. CONCLUSION: A collaborative regional approach to HPM data can support evaluation and improvement of palliative care quality at the local, aggregated, and statewide levels.





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Publication Info

Bull, Janet, S Yousuf Zafar, Jane L Wheeler, Matthew Harker, Agbessi Gblokpor, Laura Hanson, Deirdre Hulihan, Rikki Nugent, et al. (2010). Establishing a regional, multisite database for quality improvement and service planning in community-based palliative care and hospice. J Palliat Med, 13(8). pp. 1013–1020. 10.1089/jpm.2010.0017 Retrieved from

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Syed Yousuf Zafar

Adjunct Professor in the Department of Medicine

Dr. Zafar is a gastrointestinal medical oncologist and Associate Professor of Medicine, Public Policy, and Population Health Science at the Duke Cancer Institute and Duke-Margolis Center for Health Policy. He serves as Director of Healthcare Innovation at the Duke Cancer Institute. Dr. Zafar also serves as Clinical Associate Director of Duke Forge (Health Data Science Center). Dr. Zafar is considered an international expert in identifying and intervening upon the financial burden of cancer care. His research explores ways to improve cancer care delivery with a primary focus on improving the value of cancer treatment from both patient-focused and policy perspectives.

Dr. Zafar speaks internationally on his research and cancer care delivery. He has over 100 publications in top peer-reviewed journals including the New England Journal of Medicine, the Journal of Clinical Oncology, and JAMA Oncology. His research has been funded by the National Institutes of Health and the American Cancer Society, among others. His work has been covered by national media outlets including New York Times, Forbes, Wall Street Journal, NPR, and Washington Post. He is a Fellow of the American Society of Clinical Oncology.

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