OBJECTIVE: To describe the processes of establishing and running the Cancer Experiences Collaborative (CECo), and reflect upon the benefits and challenges of undertaking collaborative research in supportive and palliative care. DESIGN: A descriptive analysis of a 5-year research collaborative initiated in 2006. SETTING: Research groups at the Universities of Lancaster, Liverpool, Manchester, Nottingham and Southampton, England. PARTICIPANTS: 26 UK organisations including the four largest hospices in England, hospital cancer centres, Help the Hospices (a national charity supporting independent hospices) and user representatives. FINDINGS: The aim of CECo was to enhance the value, quality and productivity of scientific research in supportive and palliative care, and to increase research capacity and improve the coordination of collaborative research. Three programmatic themes of research were established: (i) innovative approaches to complex symptoms, (ii) planning for the care of older adults towards the end of life and (iii) research methodology including narrative approaches. Four benefits and challenges are highlighted: strategic leadership and management structures for cross-institutional work, working in multidisciplinary groups and linking research with practice settings, capacity building, and user involvement. CONCLUSIONS: The activities of CECo have resulted in significant benefits with an increase in good quality research studies that have led to the production of a significant number of peer-reviewed papers, and learning between academics, clinicians and users, which has contributed to raising the standards of supportive and palliative care research. However, the future of such research initiatives is fragile, with concerns about the sustainability of collaboration in the face of diminishing resources.
OBJECTIVE: To describe the processes of establishing and running the Cancer Experiences Collaborative (CECo), and reflect upon the benefits and challenges of undertaking collaborative research in supportive and palliative care. DESIGN: A descriptive analysis of a 5-year research collaborative initiated in 2006. SETTING: Research groups at the Universities of Lancaster, Liverpool, Manchester, Nottingham and Southampton, England. PARTICIPANTS: 26 UK organisations including the four largest hospices in England, hospital cancer centres, Help the Hospices (a national charity supporting independent hospices) and user representatives. FINDINGS: The aim of CECo was to enhance the value, quality and productivity of scientific research in supportive and palliative care, and to increase research capacity and improve the coordination of collaborative research. Three programmatic themes of research were established: (i) innovative approaches to complex symptoms, (ii) planning for the care of older adults towards the end of life and (iii) research methodology including narrative approaches. Four benefits and challenges are highlighted: strategic leadership and management structures for cross-institutional work, working in multidisciplinary groups and linking research with practice settings, capacity building, and user involvement. CONCLUSIONS: The activities of CECo have resulted in significant benefits with an increase in good quality research studies that have led to the production of a significant number of peer-reviewed papers, and learning between academics, clinicians and users, which has contributed to raising the standards of supportive and palliative care research. However, the future of such research initiatives is fragile, with concerns about the sustainability of collaboration in the face of diminishing resources.
Authors: Adam Cheng; David Kessler; Ralph Mackinnon; Todd P Chang; Vinay M Nadkarni; Elizabeth A Hunt; Jordan Duval-Arnould; Yiqun Lin; Martin Pusic; Marc Auerbach Journal: Adv Simul (Lond) Date: 2017-02-28