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The aim of the National Outcomes Database (NOD) is to enable service evaluation and benchmarking between specialist CFS/ME services. Since its inception, the NOD team have collected data from over 4,000 adult and paediatric CFS/ME patients. By the end of 2010, more than 30 clinical teams will be contributing data.

This year, changes to the original Minimal DataSet (MDS) have been made. These changes were suggested by the research subgroup of BACME after NICE guidelines were published in 2007. Two rounds of workshops at the BACME AGM in 2009 were followed by extensive consultation, including patient representation, through the NOD steering committee. Many of the changes were made to ensure complete and accurate data collection across all teams; some because teams requested specific changes; others because of the need to collect more detailed clinical and health-economic data. These changes include:

  • Diagnostic criteria are more detailed and consistent with NICE guidelines
  • Questions about impact of illness on occupation are more detailed to allow cost-benefit analysis of CFS/ME specialist service provision
  • Addition of Epworth Sleepiness Scale and EQ-5D instruments  

The clinical assessment forms and patient questionnaires have been collated into packs to make the administration of the paperwork simple for teams, particularly those teams seeing adult and paediatric patients.

Benchmarking and service evaluation focuses on patient outcomes at 12 months post-treatment. If services are effective, being able to demonstrate this to commissioners will help ensure that services are re-commissioned. The NOD team produce quarterly reports containing comparisons of patient outcomes across all teams (anonymised), which allows us to identify best clinical practice. By routinely measuring these outcomes, and benchmarking services against other teams, teams can work together to achieve the best outcomes for patients across all services.

NOD Presentation - October 2010
NOD Presentation March 2011
NOD Newsletter September 2011
NOD data report 2012