1. Specialist Palliative Care Data Professor Julia Verne Clinical Lead – National End of Life Care Intelligence Network (NEoLCIN) West Midlands Strategic Clinical Network 5 th February 2015

2. What do we currently have? National survey since 1995 NCPC - supported by NEoLCIN from 2011 Aggregated data on activity National and provider reports 2

3. How well do we die? Nearly ………500,000 deaths each year and increasing Perhaps …….50% people dying need specialist palliative care. Perhaps ……33% of people dying currently receive it We don’t know the quality of services, how they integrate and outcomes of care 3 Difficult to know Gaps in our understanding of end of life care provision Lack of evidence on what is ‘good’ end of life care

4. What do we want the data to tell us? 4 Are we meeting demand? Is care making a difference? Is there equity? Does this intervention work? What are the patterns of care across services? How does this approach compare to others? Is more investment needed? Which model of care is most effective? What do we need to do differently? Are we providing value for money? What is the evidence base?

5. The vision......better data from specialist palliative care to: Support care delivery- adding value for those collecting data Inform commissioning and funding Support service improvement- improving quality and cost-effectiveness Provide richer picture of end of life care Reduce inequalities Support integration and innovation Build the evidence base Improving care for people and their families 5

6. Funding system – data requirements 2012-2014: Palliative Care Funding Pilots recommend ‘health care currencies’ Currencies will be tested in 2015/2016 Possible implementation from 2016 Per-patient funding mechanism will require patient level collection including: age Number of diagnoses phase of illness: stable, unstable, deteriorating, dying functional status 6

7. The opportunity Single, individual-level data collection from specialist palliative care to capture demographics, activity, outcomes and support a funding system By including a limited set of routine clinical data in the collection, we can: quantify people referred to/ receive specialist palliative care. monitor clinical outcomes, and use these to drive quality improvement. monitor care pathways and better understand the way services work together support development of better commissioning models. build an evidence base of ‘what works’. 7

8. Who is involved? Led by Public Health England and NHS England Extensive knowledge of end of life care and the sector Experience and expertise in establishing a similar data collection systems Partners All relevant statutory bodies. Expert Reference Group Technical Reference Group Widespread enthusiasm 8

9. Principles Build on existing data collection Start small Link to other data-sets Use validated outcome measures Supported by national information standard Meaningful comparisons - case mix factor 9

10. Draft Pilot Data Set 10 Referral date Referral reasons GP practice code Care setting: inpt/community Ready to start date Spell start date Consent: Y/N/lacks capacity Usual residence Lives alone? Preferred place of death Personalised Care Plan EoL diagnoses Disability Spell end date Spell outcome Discharge destination Place of death Assessment ID Spell ID Assessment date Phase of Illness Date phase change Functional status Pain Breathlessness Anxiety/Distress At Peace Information needs Views on Care Impact on carer Assessor NHS Number Initial of First Name Initial of Surname Person Birth Date Person gender Ethnicity Postcode Patient Data Spell Data Assessment Data

11. Where are we now? Draft data set agreed for testing & national consultation Application made for national information standard National joint statement published September Project Board & Expert Reference Group established Promotion and consultation at regional events Next steps Formal national consultation Continue to work closely with PCF team Recruit pilot sites and IT systems providers to test Develop information governance and legal framework Confirm feasibility, identify options and costs of national roll-out 11

12. Learning from the PCF pilot sites Using the data Pilot sites collecting PCFP data have reported: Improved understanding of patient needs and outcomes Better understanding of caseload and care pathways Supported risk stratification and predicted need Enabled early identification of transition points & phase changes Allowed monitoring of patient care across different services and settings 12 Aggregated data across all pilot sites also adds to the research evidence base and contributes to our understanding of palliative care need at a population level

13. Getting involved Let us know your thoughts and suggestions Respond to the national consultation about the data set Consider if you would like to be involved as a pilot for collecting the data set or be involved with the project 13

14. Further information Project lead:malcolm.roxburgh@phe.gov.ukmalcolm.roxburgh@phe.gov.uk Programme manager: katie.lindsey@phe.gov.ukkatie.lindsey@phe.gov.uk Sign up for e-alerts: neolcin@phe.gov.ukneolcin@phe.gov.uk Please let us know if you would like to comment or participate in our work on data collection MDS is continuing in medium term and we ask provider services to continue to submit returns 14