1. Compassionate Data Using Data to deliver Compassionate End of Life Care Columbus Ohaeri, Intelligence Analyst columbus.ohaeri@phe.gov.uk National End of Life Care Intelligence Network, Public Health England

2. Today Aim: To consider how a new national data collection from specialist palliative care services can improve the evidence base for compassionate palliative and end of life care Objectives: To inform about the role of National End of Life Care Intelligence Network (NEoLCIN) current data sources and limitations, and what we can say from them how do we measure quality? the value of national data that includes outcome data plans and progress towards a new national data collection 2Hospice23 Annual National Conference 17102015

3. National End of Life Care Intelligence Network  Established 2010 to improve the collection and analysis of information related to the quality, volume and costs of palliative and end of life care.  NEoLCIN became part of Public Health England 2013. 3Hospice23 Annual National Conference 17102015 Turning data into information & information into insight

4. 4Hospice23 Annual National Conference 17102015 Monitoring EOLC Profiles for each local authority Website Building the evidence base Resources to support improvement national information standard: SCCI 1580 Palliative Care Co-ordination Guidance and expertise Compendium Themed reports EoLC profiles

5. National Data - palliative end of life care Includes: Office for National Statistics (ONS) Mortality statistics % Deaths on usual place of residence % Deaths in hospital, care home, hospice, home Linked HES-ONS data VOICES – national survey of the bereaved End of life care audit: dying in hospital MDS from specialist palliative care 5Hospice23 Annual National Conference 17102015

6. What do these data sources tell us?

7. 7 Hospice23 Annual National Conference 17102015 How many people die in England? (trend)

8. What do we know about those who died?

9. Age (and aging population) 9Hospice23 Annual National Conference 17102015

10. Changes in health in England Findings of the Global Burden of Disease Study 1990 - 2013 Hospice23 Annual National Conference 17102015 Big falls in premature mortality but not morbidity Life expectancy increased by 5.4 years (75.9 – 81.3) Top causes of early deaths – heart disease, stroke, lung cancer & COPD People are living longer but with co-morbidities, disability, or illness Reference: http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(15)00195-6.pdf

11. Cause of death (trend) 11Hospice23 Annual National Conference 17102015

12. Place of death (trend) 12Hospice23 Annual National Conference 17102015

13. Place and cause of death 13Hospice23 Annual National Conference 17102015

14. Place of death for people in hospital during their final 7 days 14 Source PHE / Hospital Episode Statistics (in-patients England) Hospice23 Annual National Conference 17102015

15. Place of death for people discharged from hospital during their final 7 days 15 Source PHE / Hospital Episode Statistics (in-patients) England Hospice23 Annual National Conference 17102015

16. What, if anything, does this say about quality of care? Hospice23 Annual National Conference 17102015

17. National Survey of Bereaved People (VOICES), 2014 Hospice23 Annual National Conference 17102015

18. VOICES Survey 2014 – Overall Quality of Care 18Hospice23 Annual National Conference 17102015

19. VOICES Survey 2014 – Right PoD? 19Hospice23 Annual National Conference 17102015

20. VOICES Survey 2014 – Pain Relief 20Hospice23 Annual National Conference 17102015

21. Which of the following would be most important to you regarding how you spend your final days? 21 Sue Ryder – A Time and a Place Survey 2014 Hospice23 Annual National Conference 17102015

22. Preferred and actual place of death – a comparison of quantitative and qualitative data

23. 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 23Hospice23 Annual National Conference 17102015 Difficult to know Gaps in our understanding of end of life care provision Lack of evidence on what is ‘good’ end of life care.

24. Developing the evidence base for compassionate end of life care A new national data collection National End of Life Care Intelligence Network (NEOLCIN) Hospice23 Annual National Conference 17102015

25. Funding palliative care: data requirements Background Palliative Care Funding Review - report published July 2011 Palliative Care Funding Pilot 2013-14 - development currency published October 2014 Development currency testing 2015/2016 working towards full implementation 2017 Aim: To develop a palliative care currency using criteria which best predict patient needs and drive costs that will support commissioners and providers to have an evidence-based discussion about the funding requirements. Data requirement for currency – Funding mechanism requires patient-level data 25Hospice23 Annual National Conference 17102015 AgeNumber of diagnoses Phase of illness stable, unstable, deteriorating, dying Functional status

26. Government recognition NHS Constitution- update 2013 NHS Mandate- improving standards of care- especially for older people and at the end of people’s lives NHS England -actions for end of life care 2014-16 Putting patients first NHS Outcomes Framework Prime Minister’s Challenge on Dementia Vulnerable older people’s plan National Choice offer for people to die at home QOF 26Hospice23 Annual National Conference 17102015

27. 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 measuring quality of care build the evidence base Improving care for people and their families 27Hospice23 Annual National Conference 17102015

28. What is quality? Structure staff, budgets, buildings, beds, equipment… Process strategies, plans, referral systems, clinics held… Output products- numbers of people treated, waiting times, number of deaths… Outcomes changes in health status or quality of life attributable to the intervention 28Hospice23 Annual National Conference 17102015 Donabedian framework

29. What do we want the data to tell us? Are we meeting demand? 29 Is care making a difference? Which model of care is most effective? Does this vary by age, gender, disease group etc? What do we need to do differently?Are we providing value for money? Does this intervention work? What is the evidence base? Is there equity? Is more investment needed? How does this approach compare to others? What are the patterns of care across services? Hospice23 Annual National Conference 17102015

30. The opportunity Single, individual-level data collection from specialist palliative care to capture demographics, activity, outcomes and support a funding system Provides data with which we can: Quantify people referred to/ receive specialist palliative care. Support integration of care between different providers Measure the effectiveness of palliative care. Compare different types of care Support local commissioning & service improvement better understand variation and reduce inequalities up quality Benchmark and drive up quality and cost-effectiveness Improving care for people and their families 30Hospice23 Annual National Conference 17102015

31. 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 31 Who is involved Hospice23 Annual National Conference 17102015

32. 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 32Hospice23 Annual National Conference 17102015

33. Outcome measure: the requirement Valid - measure what they should Reliable - can be systematically depended on in a team and over time Sensitive to change - pick up important change Clinically applicable Brief and not too burdensome - patients, families, staff 33Hospice23 Annual National Conference 17102015

34. Outcomes: being piloted Problem severity 5 questions from the integrated Palliative Care Outcome Scale (IPOS): - pain, breathlessness, anxiety/distress, information needs, ‘at peace’ Views on Care based on work by St Christopher's Hospice Group Picker/VOICES question on carer support Functional status Australian modified Karnofsky Performance Scale Phase of illness Palliative Care Phases developed by the Australian Palliative Care Outcomes Collaboration - stable, unstable, deteriorating, dying 34Hospice23 Annual National Conference 17102015

35. Draft data set - being tested 35 NHS Number Initial of Client’s First Name Initial of Client’s Surname Person Birth Date Person gender Ethnicity Assessment ID Spell ID Assessment date Phase of Illness (stable/unstable/deteriorating/dying) Functional status- Karnofsky Pain Breathlessness At peace Anxiety/Distress Information needs Views on Care Assessor Carer assessment of support Carer views on care PatientSpellAssessment Referral date Reason for referral Reason for referral 2 Reason for referral 3 GP practice code Care setting: inpatient/outpatient/community Ready for service date Spell start date Agency code Client reference Client ID Spell ID Consent Location at spell start Lives alone? Preference for place of death Personalised Care Plan offered Primary end of life diagnosis Diagnosis 2 Diagnosis 3 Postcode Disability Casemix Spell end date Spell outcome: discharged/died Discharge destination Place of death Hospice23 Annual National Conference 17102015

36. How can data be used? Individual level To inform the care of an individual Service level Audit and quality assurance Planning and service improvement Population level Commissioning Research National and international level National summary reports- public, planners, policy Comparison of key indicators 36 Hospice23 Annual National Conference 17102015

37. What have we done so far? Stakeholder engagement and partnerships Promotion and consultation (Expert groups, national events, online consultation, Patient and public consultation) Draft data set now being tested through pilots Developing a national information standard Working with IT systems providers Testing underway with 11 pilot sites Training resources available 37Hospice23 Annual National Conference 17102015

38. Pilot sites Addenbrooke’s Hospital Cambridge East Dorset Palliative Care Service: Forest Holme Hospice and Macmillan Unit Greenwich & Bexley Community Hospice Kings College Hospital NHS Foundation Trust Marie Curie Hospices Mid Yorkshire Hospitals NHS Trust Newcastle upon Tyne Hospitals NHS Foundation Trust North London Hospice Rennie Grove Hospice Care St Luke Hospice, Plymouth St Luke’s Hospice, Sheffield 38Hospice23 Annual National Conference 17102015

39. Next steps Pilots run until March 2016 - data collection & submission - evaluation - revisions to data set Develop & test a web-based data entry tool Communications strategy Develop information governance and legal framework National information standard publication Continue to work in partnership with NHS England Support sector to prepare Aiming for national rollout April 2017 39Hospice23 Annual National Conference 17102015

40. So, how can we use data to deliver compassionate end of life care? Hospice23 Annual National Conference 17102015

41. A theory of compassion as an attunement or discordance to patient need (Chellel et al. 2014) 41Hospice23 Annual National Conference 17102015

42. How will it improve the evidence? 42 Hospice23 Annual National Conference 17102015 Equalities age gender socio-economic ethnicity diagnosis disabilities geography Understanding need referral patterns comorbidities waiting times patterns of care Commissioning information about complexity and quality improvement over time measurement of effectiveness comparative data Service improvement compare outcomes for different interventions compare outcomes with other services Identifies service integration

43. Further information Project lead:malcolm.roxburgh@phe.gov.ukmalcolm.roxburgh@phe.gov.uk Programme manager: katie.lindsey@phe.gov.ukkatie.lindsey@phe.gov.uk NEOLCIN: neolcin@phe.gov.ukneolcin@phe.gov.uk Websites: http://www.gov.uk/phehttp://www.gov.uk/phe; http://www.endoflifecare-intelligence.org.ukhttp://www.endoflifecare-intelligence.org.uk 43Hospice23 Annual National Conference 17102015

44. And that’s where I’ll stop 44