Skip navigation

Developing the evidence base for end of life care

Katie Lindsey Programme Manager National End of Life Care Intelligence Network spoke at todays Improving End of Life Care conference on:

• developing the evidence for end of life care
• promoting efficient and effective data collection    
   throughout  the end of life care pathway
• the new national individual-level data collection from specialist palliative care services to support improvements in palliative and end of life care
• creating intelligence from data to improve quality and productivity in end of life care

In her presentation Katie looked at learning from national data including where deaths occur in hospital, care home, hospice or at home and whether these are the usual place of residence (in the case of care home.)  Katie said this is only a proxy indicator of quality.  Katie also listed The National Survey of the Bereaved (VOICES) which looks at the access to services and perceived quality, and The National Care of the Dying Audit - acute hopsitals, and data on specialist palliative care services.  Katie discussed how quality is defined and how to measure outcomes, engaging clinicians in the process.  She spoke of the process for compiling the data and evidence base building on existing data, and what can be gained from the information inlcuding; understanding need, supporting commissioners.  

Katie said a national information standard for palliative care will be announced shortly for publication in June 2016 meanting that all specialist services will be required to submit data from April 17.

Katie is the programme lead for the National End of Life Care Intelligence Network in Public Health England. She has been working in end of life care for 6 years and has supported a number of national improvement projects. Katie initiated the work currently underway in Public Health England to develop a new national data set for specialist palliative care and continues to support the project through partnership working with NHS England and other stakeholders. Katie trained as a physiotherapist practicing for 16 years in London and the United States before moving into project management and public health and she values the insight that her clinical background brings to her work. She has previous experience of developing national information standards and was the developer of the national information standard for end of life care co-ordination that supports Electronic Palliative Care Co-ordination Systems (EPaCCS). Katie has an MSc in public health from the London School of Hygiene and Tropical Medicine.

Future events of interest: 

Legal Issues in End of Life Care Masterclass
Thursday 12 November 2015 
Hallam Conference Centre, London

Implementing the NICE Clinical Guideline on Care of the Dying Adult
Tuesday 26 January 2016 
Hallam Conference Centre, London

Legal Issues in End of Life Care Masterclass
Tuesday 12 April 2016 
Hallam Conference Centre, London

Download: Katie Lindsey full presentation

23 September 2015


    Partner Organisations

    The Tavistock and Portman NHS Foundation TrustInPracticeClinical Audit Support CentrePlayoutJust For Nurses
    GGI (Good Governance Institute) accredited conferences CPD Member BADS (British Association of Day Surgery) accredited conferences