title: Establishing a regional, multisite database for quality improvement and service planning in community-based palliative care and hospice.
abstract: 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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  A collaborative regional approach to HPM data can support evaluation and improvement of palliative care quality at the local, aggregated, and statewide levels.
authors.affiliation: Four Seasons, Flat Rock, North Carolina, USA.
authors.forename: Janet
authors.initials: J
authors.lastname: Bull
authors.forename: S Yousuf
authors.initials: SY
authors.lastname: Zafar
authors.forename: Jane L
authors.initials: JL
authors.lastname: Wheeler
authors.forename: Matthew
authors.initials: M
authors.lastname: Harker
authors.forename: Agbessi
authors.initials: A
authors.lastname: Gblokpor
authors.forename: Laura
authors.initials: L
authors.lastname: Hanson
authors.forename: Deirdre
authors.initials: D
authors.lastname: Hulihan
authors.forename: Rikki
authors.initials: R
authors.lastname: Nugent
authors.forename: John
authors.initials: J
authors.lastname: Morris
authors.forename: Amy P
authors.initials: AP
authors.lastname: Abernethy
mesh_terms: D000368:Aged; D000553:Ambulatory Care / Q000458:organization & administration; D003266:Continuity of Patient Care; D003299:Cooperative Behavior; D003625:Data Collection; D016208:Databases, Factual; D005260:Female; D006297:Health Services Accessibility; D006302:Health Services Research; D017051:Hospice Care / Q000458:organization & administration; D006801:Humans; D007373:Interinstitutional Relations; D008297:Male; D009657:North Carolina; D010166:Palliative Care / Q000458:organization & administration; D016730:Program Development; D015397:Program Evaluation; D058996:Quality Improvement / Q000458:organization & administration*; D012040:Regional Health Planning / Q000458:organization & administration*