Better Together: The Making and Maturation of the Palliative Care Research Cooperative Group

Abstract

Objective: To describe the growth and outcomes of the Palliative Care Research Cooperative Group (PCRC). Background: Despite advances, significant gaps remain in the evidence base to inform care for people with serious illness. To generate this needed evidence and bolster research capacity, the Palliative Care Research Cooperative (PCRC) group was formed. Methods: The PCRC supports investigators in the conduct of multisite clinical studies. After developing a governance structure and completing a proof of concept demonstration study, the PCRC expanded its infrastructure to include additional resource cores (Clinical Studies; Measurement; Data Informatics and Statistics; and Caregiver Studies). The PCRC also supports an Investigator Development Center as many palliative care investigators valued opportunities to advance their skills. Additional key aspects of PCRC resources include a Scientific Review Committee, a Publications Committee, and initiatives to purposefully engage investigators in a community of palliative care science. Results: The PCRC has grown to over 300 members representing more than 130 distinct sites. To date, the PCRC has supported the submission of 51 research applications and has engaged in 27 studies. The PCRC supports investigator research development needs through webinars and clinical trials ''intensives.'' To foster a sense of community, the PCRC has convened biannual meetings, developed special interest groups, and regularly communicates via a newsletter and its website. Conclusion: With a particular focus on facilitating conduct of rigorous multisite clinical studies, the PCRC fosters an engaged multidisciplinary research community, filling an important void in generating and disseminating evidence that informs the provision of high-quality care to people with serious illness.

Follow the trail: Using insights from the growth of palliative care to propose a roadmap for cancer rehabilitation

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“…Evidence growth has been impeded by small, single-site trials, unrepresentative study cohorts and studies lacking sufficient rigour. 3 By inviting submissions focussed on ‘Research Methodology and Methods,’ we acknowledge its importance to strengthening future research that informs palliative care development, while offering flexibility where it would be challenging to fit the advancement into an existing paper style such as an original article or systematically constructed review.…”

The National Institute of Nursing Research: A Glance Back, and A Vision for the Future

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“…Establishing a Palliative Care Research Cooperative that has brought together over 160 research sites with the goal of facilitating the conduct of palliative care research (Ritchie, Pollak, Kehl, Miller, & Kutner, 2017).…”