2. Realising the power of patients to produce tangible and radical reforms Shared Decision Making – MAGIC or not? Dave Tomson Primary Care lead for MAGIC – North East GP and Freelance consultant in patient centred primary care

3. Preliminary thoughts/ context Mainly focussing on service/ individual level – background in general practice and life long interest in the pivotal function of the consultation Getting less keen on idea of ‘patient engagement’ – like ‘collaborative practice’ better - similarly moving away from ‘patient activation’ towards – patients having right skills knowledge and confidence to manage their conditions effectively (thanks to Simon Eaton for this) Will also talk about some of work in my own practice Will talk about Shared decision Making SDM & MAGIC 10 mins – lay out the territory – rest of the time lets discuss the issues!

4. Practice activity Getting the most out of your consultation leaflet Early adopters of PILS patient information leaflets Research in copying letters to patients Patient participation group Pioneer for MAGIC First wave Year of Care Skills development programme for all staff including video review Redesigning supported self management Not sure how much difference all this is making?

5. Newcastle Richard Thomson Cardiff Glyn Elwyn Acknowledgements: The Health Foundation, Cardiff and Vale University Health Board, Newcastle upon Tyne Hospitals NHS Foundation Trust, and most importantly all staff and patients involved across both sites MAGIC – MAking Good decisions In Collaboration

6. Evidence-based patient decision support PLUS Social marketing Clinical skills development Organisation and clinical team engagement and leadership Measurement and rapid feedback, action learning, quality improvement cycles Patient & public engagement Focusing on implementation

7. Paternalistic Informed Choice Shared Decision Making Patient well informed (Knowledge) Knows what’s important to them (Values elicited) Decision consistent with values SDM is an approach where clinicians and patients make decisions together using the best available evidence. (Elwyn et al. BMJ 2010) Models of clinical decision making in the consultation

8. Model of SDM consultation

10. I think I prefer this option…

11. Posters, leaflets, calling cards Questionnaires DVD – JUST ASK 3 Questions approach Based on original Australian research, adapted after an iterative approach with patients (Shepherd et al, University of Sydney): What are my Options What are the possible benefits and risks? How can we make a decision together that is right for me? collaborative practice (we called it Patient Activation at the time)

12. A6 flyer for use in appointment letters, waiting areas, consulting rooms. Posters for use in waiting areas and consulting rooms. Short film to encourage patient Involvement: ‘So Just Ask’ Acknowledgement to Shepherd et al, School of Public Health, University of Sydney Ask 3 Questions

13. A True story! Small surgery – 3000 and two main GPs A great DVD A brand new screen in a small waiting room Looped showing every 10-15mins Leaflets on the chairs every morning 3 months WHAT HAPPENED?

14. Triangulation – inviting more involvement AND Skills development Clinicians need to meet patients half way – it takes at least two to change the dynamic Trained lots of people, detailed educational programme Increasingly focused on attitudes KEY debate: Rolling out skills training for all or nudge the whole curve Design for the multiple ways of increasing the chances of collaborative practice YOC – giving patients results ahead of appointments Using Brief Decision Aids (BDAs) and Option Grids Parkinsonnet ( BMJ this last week)

15. SDM or patient centred practice Currently lots of silos – Supported self management, care planning, end of life care, motivational interviewing and shared decision making Skills for 21st Century practice? Continuum TOOLS SKILLS Episodic - SDM Lifestyle and LTC

16. Challenges Different patients want different styles of working at different stages of illness trajectory Mistaking choice for collaboration Measuring what makes a difference Sustaining program across all levels and for sufficient time Power, knowledge and attitudes remain significant issues

18. Realising the power of patients to produce tangible and radical reforms- moving from the possible to the essential in the new NHS

19. Realising the power of Patients to Produce Tangible and radical Reforms- moving from the possible to the essential in the new NHS

20. Governing BodyCommunity Forum Council of Members

21. Community Forum Council of Members Older People Disabilities & Mental Health Unscheduled Care Planned Care Women and Children Prescribing & Medicines Wellbeing & Prevention CCG Governing Body/Partnership Board

22. Coming together is a beginning; keeping together is progress; working together is success. -Henry Ford

24. OPM Breakfast Seminar 27 th March 2014 Dr Tim Williams MA MBBS Co-founder & Director @t1mwilliams

25. Helps patients to measure their clinical condition throughout their care & share progress with those involved

26. Started with a clinical need to respond to outpatients department capacity / demand mismatch (I)  1,200 hip and knee replacements per year  Best practice: review at 1yr, 3,yr, 5yr, and every 5 years  BUT… real financial pressures sometimes restricts ideal practice Royal Cornwall Hospitals, 2011

27. An emerging need for clinicians to be increasingly accountable (II) Revalidation Publication of clinician-level data

28. While the commissioning & provider landscape rightly increases emphasis on transparency and improved outcomes (III) Everyone Counts, NHS England, 2013-14

29. We think that allowing patients to monitor the outcomes that matter to them throughout their care is essential  PROMs are clinically-validated condition- specific questionnaires  Quantify symptoms  Inform clinical decisions  Overview of quality of care  Used in clinical trials… cost has limited clinical use  Our focus is on making collection engaging and reports useful and useable for patients and doctors Overview

30. The National PROMs Programme was introduced in 2009 to begin to compare and improve quality  4 procedures  Condition-specific & generic well- being scores  Pre-op and 6 months  c. 250,000 pts/ yr = c. 3.5% elective admissions  Organisation level reporting  Pen, paper and post  c. £4 - £6.50 per patient  Reports published c. 6/12 later  No primary use - individual patients do not benefit What? How? PROMs Programme Overview

31. But five years on comprehensive data collection is still an issue 1. Source: www.hscic.gov.uk 1. Difference includes cancellations and deaths 2. Acknowledged as underestimate due to time delay Overall linkage, Apr – Sep 2013 (published 13 th Feb ‘14) Pre-op returns Eligible procedures Post-op sent out 1 Post-op returns 2 122,571 89,157 37,278 13,690 11% linked pre and post-op (by 5 months)

32. What happens to patients who aren’t faring so well? Improvement rate by procedure & measure, Apr – Sep 2013 (published 13 th Feb) Source: www.hscic.gov.uk

33. When do those who are faring well deteriorate, and what’s the cause of that variation? Improvement rate by procedure & measure, Apr – Sep 2013 (published 13 th Feb) Source: www.hscic.gov.ukwww.hscic.gov.uk 1. Pts 70, 90% chance of dying first). Pts with post-op OHS 34 it’s 0.7%. Rothwell et al. JBJS, March 2010

35. Patient sign-up @myClinOutcomes

36. Patient sign-up @myClinOutcomes

37. Patient sign-up @myClinOutcomes

38. Patient sign-up @myClinOutcomes

39. Score completion @myClinOutcomes

40. Patient Dashboard: Your progress

41. @myClinOutcomes

46. Developing the system with a mix of clinicians at different sites has produced a highly flexible platform  12 hospitals, 1 CCG so far  94 registered clinicians  > 5,500 registered patients  > 42,00 assessments  Orthopaedics & trauma  Cardiology  NPP PROMs module  Oncology / palliative care in development Progress to date

47.  Consider patients according to needs  Co-define and measure outcomes that matter to those groups throughout the full care cycle  Align all parts of patient pathway to provide the highest quality of care  Commission services around outcomes rather than volume delivered (ultimately at the lowest cost) “The central goal in healthcare must be value for patients, not access, volume, convenience or cost containment” – Prof Michael E. Porter Value Based Healthcare Source: The Strategy That Will Fix Healthcare. Michael E. Porter & Thomas H. Lee; Harvard Business Review, Oct 2013

48. tim@myClinicalOutcomes.co.uk +44 777 999 0276 @t1mwilliams @myClinOutcomes Thank you! 1. ISPOR.org 2. Illustration by Jill Dawson, BMJ 2010;340:c186