title: A strategy to advance the evidence base in palliative medicine: formation of a palliative care research cooperative group.
abstract: BACKGROUND
  Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping.
  
  
  METHODS
  A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care.
  
  
  RESULTS
  The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success.
authors.affiliation: Division of Medical Oncology, Department of Medicine, Duke University Medical Center, Durham, North Carolina 27710, USA. amy.abernethy@duke.edu
authors.forename: Amy P
authors.initials: AP
authors.lastname: Abernethy
authors.forename: Noreen M
authors.initials: NM
authors.lastname: Aziz
authors.forename: Ethan
authors.initials: E
authors.lastname: Basch
authors.forename: Janet
authors.initials: J
authors.lastname: Bull
authors.forename: Charles S
authors.initials: CS
authors.lastname: Cleeland
authors.forename: David C
authors.initials: DC
authors.lastname: Currow
authors.forename: Diane
authors.initials: D
authors.lastname: Fairclough
authors.forename: Laura
authors.initials: L
authors.lastname: Hanson
authors.forename: Joshua
authors.initials: J
authors.lastname: Hauser
authors.forename: Danielle
authors.initials: D
authors.lastname: Ko
authors.forename: Linda
authors.initials: L
authors.lastname: Lloyd
authors.forename: R Sean
authors.initials: RS
authors.lastname: Morrison
authors.forename: Shirley
authors.initials: S
authors.lastname: Otis-Green
authors.forename: Steve
authors.initials: S
authors.lastname: Pantilat
authors.forename: Russell K
authors.initials: RK
authors.lastname: Portenoy
authors.forename: Christine
authors.initials: C
authors.lastname: Ritchie
authors.forename: Graeme
authors.initials: G
authors.lastname: Rocker
authors.forename: Jane L
authors.initials: JL
authors.lastname: Wheeler
authors.forename: S Yousuf
authors.initials: SY
authors.lastname: Zafar
authors.forename: Jean S
authors.initials: JS
authors.lastname: Kutner
mesh_terms: D003299:Cooperative Behavior; D019317:Evidence-Based Medicine; D006302:Health Services Research; D006801:Humans; D010166:Palliative Care