A strategy to advance the evidence base in palliative medicine: Formation of a palliative care research cooperative group

Amy Abernethy, Noreen Aziz, Ethan Basch, Janet Bull, Charles Cleeland, David Currow, Diane Fairclough, Laura Hanson, Joshua Hauser, Danielle Ko, Linda Lloyd, R Morrison, Shirley Otis-Green, Steve Pantilat, Russell Portenoy, Christine Ritchie, G Rocker, J Wheeler, S. Yousuf Zafar, Jean Kutner

    Research output: Contribution to journalArticle

    65 Citations (Scopus)

    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.

    Original languageEnglish
    Pages (from-to)1407-1413
    Number of pages7
    JournalJournal of Palliative Medicine
    Volume13
    Issue number12
    DOIs
    Publication statusPublished - 1 Dec 2010

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