Realising the power of patients to produce tangible and radical reforms

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. MAGIC – MAking Good decisions In Collaboration NewcastleRichard Thomson CardiffGlyn Elwyn Acknowledgements: TheHealth 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

6. Focusing on implementation • 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

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

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’ Ask 3 Questions Acknowledgement to Shepherd et al, School of Public Health, University of Sydney

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 TOOLS SKILLS • 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 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 Patientsto Produce Tangible and radical Reforms- moving from the possible to the essential in the new NHS

20. Council of Members Governing Body Community Forum

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

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

24. OPM Breakfast Seminar27th March 2014Dr Tim Williams MA MBBSCo-founder & Director@t1mwilliams

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

26. Royal Cornwall Hospitals, 2011 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

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

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

29. Overview 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

30. PROMs Programme Overview The National PROMs Programme was introduced in 2009 to begin to compare and improve quality What? How? • 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

31. Source: www.hscic.gov.uk1. Difference includes cancellations and deaths2. Acknowledged as underestimate due to time delay Overall linkage, Apr – Sep 2013 (published 13th Feb ‘14) But five years on comprehensive data collection is still an issue 122,571 11% linked pre and post-op (by 5 months) 89,157 37,278 13,690 Pre-op returns Post-op sent out1 Post-op returns2 Eligible procedures

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

33. Improvement rate by procedure & measure, Apr – Sep 2013 (published 13th Feb) Source: www.hscic.gov.uk 1. Pts < 50, 90% chance of revision before death (>70, 90% chance of dying first).Pts with post-op OHS <27 7.6% chance of revision within 2 years; >34 it’s 0.7%. Rothwell et al. JBJS, March 2010 When do those who are faring well deteriorate, and what’s the cause of that variation?

35. @myClinOutcomes Patient sign-up

36. @myClinOutcomes Patient sign-up

37. @myClinOutcomes Patient sign-up

38. @myClinOutcomes Patient sign-up

39. @myClinOutcomes Score completion

40. @myClinOutcomes Patient Dashboard: Your progress

41. @myClinOutcomes

42. @myClinOutcomes

46. Progress to date 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

47. Value Based Healthcare Source: The Strategy That Will Fix Healthcare. Michael E. Porter & Thomas H. Lee; Harvard Business Review, Oct 2013 “The central goal in healthcare must be value for patients, not access, volume, convenience or cost containment” – Prof Michael E. Porter • 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)

48. Thank you! tim@myClinicalOutcomes.co.uk +44 777 999 0276 @t1mwilliams @myClinOutcomes • 1. ISPOR.org2. Illustration by Jill Dawson, BMJ 2010;340:c186