Developing an active research culture within an organization such as a hospice can ensure that the right evidence is used, in the right way, at the right time to plan, deliver and evaluate care.
In 2013, the Commission into the Future of Hospice Care published ‘Research in palliative care: can hospices afford not to be involved’. The report identified key reasons why research is required in hospice care. These include:
- Evidence based treatment and care.
- To test and improve complex interventions.
- To provide best evidence to support negotiations with commissioners and purchases. of hospice services.
- To provide evidence of cost-effectiveness of hospice care.
- To create a culture of inquiry.
The quality of evidence that underpins key guidelines on end of life care for infants, children, and young people has been described as low or very low. Organisations that deliver paediatric palliative and end of life care have a key role in addressing the gap in quality evidence. One of the ways they can do this is by becoming more research active as an organization.
Creating an active research culture both within organisations and across the sector means crucial evidence can be developed to help plan and deliver care. See below for two examples of research in paediatric palliative care:
- Mothers of children with life-limiting conditions are at risk of serious health problems
- Most children with life-limiting conditions still die in hospital, not home or hospice
More broadly, this page on the NIHR website gives examples of creating a research culture that can generate better patient care outcomes, create a happier workforce, and provide benefits for the health and care system.
Ways of creating an active research culture
A good place to start is to consult the Research Framework for Hospices that provides guidance for the three levels of active research engagement:
- Level 1: Research awareness in all professional staff.
- Level 2: Engagement in research generated by others.
- Level 3: Engagement in research activities and leadership in developing and undertaking research.
This resource is produced by the CoPPAR network funded by the NIHR, you can find out more about CoPPAR here