Dying without data: Modernising the Core Specialist Palliative Care Minimum Data Set

Background: The Minimum Data Set (MDS) for specialist palliative care services was developed in 1995 to provide annual data on palliative care services in the UK. The development of payment by results and health resource groups together with identified limitations of the current MDS including missing data, the potential for double counting, resulted in a project that aimed to revise the MDS. Methods: A modified action research approach was adopted for the study. Phase one focused on modernising the MDS. Purposive sampling was used to invite key stakeholders from multidisciplinary specialist palliative care services from across England and Wales to participate. 38 respondents attended 3 workshops, where each section of the MDS were discussed and revised. Phase two piloted the revised MDS. Pilot data analysis and views of the pilot site respondents was undertaken. Additionally the revised MDS was reviewed by a panel of experts. The revised MDS was then presented at a showcase event for final agreement by all participants. Results: There was a consensus that the MDS did not completely reflect current patient workload, extent of services provided or the development of integrated palliative care services. Modifications to all the sections of the MDS were made and changes to terminology made. Conclusions: An action research approach enabled a national consultation process to be completed effectively. The involvement of a wide sample of stakeholders ensured revisions were made based upon a national consensus of opinion and met the changing provision of specialist palliative care services. Further information regarding the process, and changes made to the MDS will be discussed