An action research project to modernise the Minimum Data Set (MDS) for Specialist Palliative Care Services in the United Kingdom

Background: The Minimum Data Set (MDS) for specialist palliative care services was developed in 1995 to provide annual data on palliative care services. 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 and a 68% return rate, resulted in a current collaborative project between the National Council for Palliative Care and the Marie Curie Palliative Care Institute Liverpool to revise and update the MDS. Method: A modified action research approach was selected for the project. A purposive sampling was used to invite key stakeholders including the multidisciplinary specialist palliative care services involved in the completion of the MDS from across England and Wales. 28 respondents attended 2 workshops, where each section of the MDS were discussed and revised. Revised sections were then returned to the participants for review and comments. Results: There was a consensus that the MDS did not completely reflect the current patient workload, the extent of services provided or the development of integrated palliative care services. Additionally with the development of regional Cancer Network Groups (CNG) some data was more appropriately collected regionally by the CNG. Conclusion: A modified action research approach enabled a national consultation process to be completed effectively. The involvement of a wide sample of stakeholders ensured the revisions were made based upon a national consensus of opinion and met the changing provision of specialist palliative care services. Further information regarding the action research process, the changes made to the MDS and forthcoming pilot will be presented.