S224 - Day 1 - 1200 - Outcome measures in person centred co-ordinated care, what are we measuring
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  • This is a key diagram (always has high face validity for patients and everyone else in the audience - helps them really see what the issues of living with a LTC are really about). ItDemonstrates the need visually from the person’ point of viewIdentifies the problems with the current approach Provides a visual framework to hang the Delivery System on. The DS addresses all the aspects across the ‘whole System’NB Drawn by people with LTCs on a paper table cloth at a World Café workshop. Points to note: People with LTCs are self managing all the time (8757 hours) – it is not something that can be ‘given to them’ or ‘allowed’ by the NHSThe contacts with NHS usually appear regularly – uncoordinated with the ups and downs of everyday lifeSurveys show that less than half the time allotted to the orange bars is devoted to discussing living with the condition or self management along the green wavy line.
  • 7% of the population are at level 1 activation- they tend to enjoy a worse quality of life and have worse outcomes than people at level 4 activation


  • 1. Outcome measures in person- centred care What are we measuring and why? Dr Alf Collins Clinical Associate in Person-Centred Care The Health Foundation
  • 2. Dorothy
  • 3. Dorothy is 79 and was recently widowed- she now lives alone and life is a struggle. Her knees are playing up- she is seeing a surgeon next month to discuss an operation. She is worried about that- her diabetes hasn't been good for a year or two and her doctor has recently told her that her smokers cough is more serious and is something called 'COPD'. All in all, she is feeling quite low; maybe she should talk to someone? Maybe she should even think about moving home- even the stairs are a struggle now.
  • 4. 1. How do we make sure that the system puts Dorothy first? In everything it does? Always? 2. What is the system trying to achieve?
  • 5. If the system is (primarily) trying to: • Manage HbA1c in its population of diabetics • Reduce unscheduled hospital admissions • Reduce length of stay for people with LTCs It won’t necessarily put Dorothy first
  • 6. Our system. The House of Care
  • 7. Engaged, informedpatients HCPscommittedto partnershipworking Organisational processes Responsive commissioning Accurate contact details IT: clinical record of care planning Know your population Test results and agenda setting Consultation skills and attitudes Integrated, multi- disciplinary team and expertise Senior buy-in and local champions Prepared for consultation Information and structured education Emotional and psychological support Develop market to meet current and future needs Identify needs, map resources Quality assure and monitor Establish and publicise menu of care Ensure time for consultations, training and IT Collaborative care and support planning
  • 8. Successful systems Principles, activities and purpose • Focus on purpose (the outcome they are trying to achieve) • Put in place processes (activities) to deliver on outcome • Underlying the processes are principles; propositions that serve as foundations for a chain of reasoning
  • 9. Successful systems Principles Processes Purpose
  • 10. Successful measurement systems Principles Process Measures Outcome Measures
  • 11. Successful measurement systems: • Focus on purpose (‘why measure?’) – Insight – Improvement – Assessment – Judgment • Are parsimonious (fewest possible number of indicators- especially outcome indicators) • Are coherent (indicators logically relate to each other)
  • 12. High quality systems demonstrate process reliability Outcome Process 1 Process 2 Process 3
  • 13. Measurement coherence Outcome measure Process measure 1 Process measure 2 Process measure 3
  • 14. What are the principles of person- centred care?
  • 15. Dorothy should always be treated with dignity, respect and compassion Dignity, respect, compassion
  • 16. She should also experience co- ordinated treatment, care or support Dignity, respect, compassion Co-ordination
  • 17. She should also experience personalised treatment, care or support Dignity, respect, compassion Co-ordination Personalisation
  • 18. She should also experience enabling treatment, care or support Dignity, respect, compassion Co-ordination Personalisation Enablement
  • 19. Principles • Compassionate • Co-ordinated • Personalised • Enabling Collaborative care and support planning Outcome
  • 20. What is our outcome?
  • 21. Care plans and care planning
  • 22. Care plans- outputs not outcomes
  • 23. A primary assumption: Self management is usual care Hours with NHS / social care professional = 3 in a year Self management = 8757 in a year
  • 24. The system should support Dorothy to develop the knowledge, skills and confidence to manage her own health
  • 25. Measures of knowledge, skills and confidence to manage own health • Unidimensional – Patient Activation Measure (PAM). 13 items • Multidimensional – Health Literacy Survey for Europe Questionnaire (HLS-EU-Q). 47 items. – Health Literacy Questionnaire (HLQ). 44 items – Health Education Impact Questionnaire (heiQ). 42 items
  • 26. All are stable and reliable with high construct and face validity Questions: Practical utility and predictive power
  • 27. Patient activation measure: useful and predictive • Unidimensional (ie measures a single concept) • Developmental (ie appropriate interventions can support people to progress on a journey of activation) • Knowledge, skills and confidence to self manage • 13 items • Score out of 100 • 4 levels
  • 28. 7% of population 14% of population 21% of the population has low or no confidence to self manage
  • 29. People at low levels of activation tend to: • Feel overwhelmed with the task of managing their health • Have low confidence in their ability to have a positive impact on their health • Not understand their role in the care process • Have limited problem solving skills • Have had a great deal of experience with failure in trying to manage, and have become passive with regard to their health • Say they would rather not think about their health
  • 30. As compared to people at low levels of activation, people at higher levels tend to: • ‘Be engaged’ – Come prepared – Ask questions – Make decisions – Have less unmet needs (nb inequalities) • Have improved clinical outcomes (including mental health) • Enjoy an improved quality of life • Use less healthcare resource • Feel satisfied at work Why Does Patient Activation Matter? An Examination of the Relationships Between Patient Activation and Health-Related Outcomes. Jessica Greene and Judith H. Hibbard Journal of General Internal Medicine, published online Nov. 30, 2011
  • 31. People with Lower Activation Associated with Higher Costs; Delivery Systems Should Know Their Patients’ ‘Scores’
  • 32. Tailored interventions can support people on their journey of activation Thus tailored interventions improve all other ‘downstream’ indicators
  • 33. Uses of patient activation measure Segmentation •Target resources •Use resources more effectively Tailored coaching •Start where people are •Personalise support Programme assessment •Quality assure interventions •Improve quality of interventions Predictive modelling •More sophisticated understanding of drivers of risk
  • 34. Integration: a means to an end integration Co- ordination Activation
  • 35. The enabling process of scheduled collaborative care and support planning P R E P A R A T I O N Professional Agenda Personal Agenda Follow upPersonal GoalsNegotiated agenda Output= care plan Outcome= activation
  • 36. Downside is licencing NHSE in active negotiation with licence holders (Insignia)
  • 37. NHSE PAM learning set Contact me: alf_collins@hotmail.com Launch of Kings Fund Monograph (Helen Gilburt and Judith Hibbard) May 6th 2014