From the inception of the hospice movement, research has been identified as essential to the delivery of high quality palliative and end-of-life care. Despite delivering compassionate care and excellent symptom management, research has not been embedded in hospice care. Recognising the need for greater engagement in research, our organisation first piloted the Research Lead programme in 2011. The aim was to facilitate participant involvement in palliative care studies, to facilitate evidence based practice, and to create a culture of enquiry.
Full time Research Leads were appointed at three hospices in England, Scotland and Northern Ireland. A 2013 evaluation identified the benefits of such relationship-based, proactive roles. These included increased participation of patients, staff and carers in research, and enhanced research support and mentoring to all professional groups. This positive outcome contributed to programme expansion, with our organisation now employing five hospice-based research leads, each developing collaborations with regional academic institutions.
Outcomes associated with increased investment in research staff at hospices are both tangible and intangible. Tangible outcomes include numbers of participants recruited for research studies, and traditional academic outputs: publications and research grants involving hospice staff, students supervised and conference presentations. Other outcomes, relate to impact and include press releases; blogs and newspaper articles based on research findings as well as contributions to local, regional and national policy, and increased staff awareness, which is crucial to an enquiring workforce.
Models of hospice research engagement are still in their infancy and need to be developed and evaluated. While the primary goal of hospices is to provide excellent, patient-centred physical, social, psychological and spiritual care to patients and families, we suggest that hospices should also consider the vital role they contribute to developing evidence based care of the future.
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