1. Dave Tomson d.p.c.tomson@ncl.ac.uk Shared Decision Making

2. MAGIC MA king G ood decisions I n C ollaboration Shared decision making the norm Multi-centre, large scale implementation programme How can we embed in mainstream health services ?

3. Shared Decision Making… What’s it all about ? Why do we do it ? When do we use it ? How can we do more ?

4. So where do you stand? Individually choose one of these three statements: 1.Healthcare professionals are responsible for supporting patients to make decisions that the patient feels are best for them, even if the professional disagrees 2.Patients should only be involved in decisions about alternative treatments when the alternatives are equally effective. 3.Some patients prefer the clinician to make the decision for them, and in this case that is what should happen. Give your statement a score between 1 and 10 0 = completely DISAGREE with the statement 10 = completely AGREE.

5. What’s it all about ?

6. Poor decision quality Patients: unaware of treatment or management options and outcomes Clinicians: unaware of patients’ circumstances and preferences The Clinical Decision Problem Slide from Foundation for Informed Medical Decision Making With thanks to Angela Coulter

7. 7 Sharing Expertise Clinician Diagnosis Disease aetiology Prognosis Treatment options Outcome probabilities Patient Experience of illness Social circumstances Attitude to risk Values Preferences Slide from Foundation for Informed Medical Decision Making With thanks to Angela Coulter

8. Models of clinical decision making in the consultation Paternalistic Informed Choice Shared Decision Making

9. Models of clinical decision making in the consultation Paternalistic Informed Choice Shared Decision Making

10. “When we want your opinion, we’ll give it to you”

11. Models of clinical decision making in the consultation Paternalistic Informed Choice Shared Decision Making

12. “I’m sorry doctor, but again I have to disagree”

13. Models of clinical decision making in the consultation Paternalistic Informed Choice Shared Decision Making

15. I think I prefer this option…

16. 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)

17. “Shall I have a knee replacement?” “Shall I have a prostate operation?” “Shall I take a statin tablet for the rest of my life?” “Should I use insulin or an alternative?” “I would like to lose weight” “I would like to eat/smoke/drink less” Spectrum of SDM to SMS TOOLS SKILLS

18. Shared Decision Making…. Are you doing it?

19. Answer Yes – but not as much as people want

20. Why do we do it ?

21. A RE PATIENTS INVOLVED ? % Wanted more involvement in treatment decisions Source: NHS inpatient survey s

22. SDM – Why do we do it ? Evidence : Cochrane Review of Patient Decision Aids(O’Connor et al 2011): Improve knowledge More accurate risk perceptions Feeling better informed and clear about values More active involvement Fewer undecided after PDA More patients achieving decisions that were informed and consistent with their values Reduced rates of: major elective invasive surgery in favour of conservative options; PSA screening; menopausal hormones Improves adherence to medication (Joosten, 2008) Better outcomes in long term care “No decisions in the face of avoidable ignorance” Reduce unwarranted variation

23. Decision Aids reduce rates of discretionary surgery RR=0.76 (0.6, 0.9) O’Connor et al., Cochrane Library, 2009

24. Musculoskeletal programme- variation in knee replacement activity Extra slide

25. Shared decision making about treatments: Patients who don’t have decision support: Are 59 times more likely to change their mind Are 23 times more likely to delay their decision Are five times more likely to regret their decision Blame their practitioner for bad outcomes 19% more often Thanks to Alf Collings

26. Decision aid and coaching in gynaecology Extra slide

27. When do we use it ?

28. SDM – When is it appropriate? SDM not right for all decisions (but is still useful in some surprising situations) Genuine choices sensitive to patient preferences – Early breast cancer - mastectomy or breast conserving surgery – LUTS – watchful waiting, medication, surgery – CVD risk reduction – statins or diet/exercise – Hyperacute stroke?

29. Core skills in SDM

30. Core Skills in SDM Preference Talk Deliberation Patient Decision Support materials Decision Choice Talk Option Talk

31. SDM Consultation skills Choice talk Introduce preference sensitive decision. Respond to patient’s reaction, Introduce preference talk Option talk Introduce options, detail pros and cons, check understanding, introduce decision support, continue preference talk when appropriate Deliberation Help patient to deliberate about options, could be supported by decision specific / generic decision support tool Preference/decision talk In light of options clarify ‘what matters to me’ – the values and preferences of the patient Decision Immediate or delayed SDM consultation skills

32. Brief exercise

33. What do you need to do SDM? Willingness to do SDM – clinicians and patients Key SDM Skills Support tools Organisational system to support SDM

34. Decision aids: their role and their pitfalls

35. Decision Support Intervention s Generic tools Decision specific tools » BDAs » Option Grids » NHS Variety of formats » Websites » Interactive tools » Leaflets & booklets » DVDs

36. Shared decision making – support for HCPs and patients 10 Brief Decision Aids (BDAs) available now on patient.co.uk Around 15 more in development Inform patients (and clinicians!) In consultation/take home On-line Patient Decision Aids http://sdm.rightcare.nhs.uk/pda/

37. Lumpectomy with Radiotherapy Mastectomy Which surgery is best for long term survival? There is no difference between surgery options. What are the chances of cancer coming back? Breast cancer will come back in the breast in about 10 in 100 women in the 10 years after a lumpectomy. Breast cancer will come back in the area of the scar in about 5 in 100 women in the 10 years after a mastectomy. What is removed? The cancer lump is removed with a margin of tissue. The whole breast is removed. Will I need more than one operation Possibly, if cancer cells remain in the breast after the lumpectomy. This can occur in up to 5 in 100 women. No, unless you choose breast reconstruction. How long will it take to recover? Most women are home 24 hours after surgery Most women spend a few nights in hospital. Will I need radiotherapy? Yes, for up to 6 weeks after surgery. Unlikely, radiotherapy is not routine after mastectomy. Will I need to have my lymph glands removed? Some or all of the lymph glands in the armpit are usually removed. Will I need chemotherapy? Yes, you may be offered chemotherapy as well, usually given after surgery and before radiotherapy. Will I lose my hair?Hair loss is common after chemotherapy. Option Grid

38. Patients’ knowledge post diagnostic consultation Measuring impact of change in clinical practice (Option Grid)

41. Patient Decision Aids – key messages Have much value, but need to be accessible at the right time and designed for purpose We will never have enough PDAs for all decisions PDAs are an adjunct to good clinical practice BMJ recently made clear that…. you can have PDAs available, and clinicians trained to use them but this does not necessarily change patient experience – the challenge of the ‘black box’ PDAs are helpful, skills are even more helpful but…. Attitudes trump all!

43. Decision Support Interventions Facilitate patient involvement in SDM Provide information about options Help patients think about: – how they would feel about possible outcomes – think about what’s important to them

44. Key Reading Elwyn G, Laitner S, Coulter A, Walker E, Watson P, Thomson R. Implementing shared decision making in the NHS. BMJ 2010;341:c5146 http://www.bmj.com/content/341/bmj.c5146 http://www.bmj.com/content/341/bmj.c5146 Coulter A Do patients want a choice and does it work? BMJ 2010;341:c4989 http://www.bmj.com/content/341/bmj.c4989 http://www.bmj.com/content/341/bmj.c4989 Shared Decision-Making in Health Care: Achieving evidence-based patient choice Second Edition A Edwards, G Elwyn 2009 Oxford University Press, Oxford Al Mulley King’s Fund Report. Patients’ preferences matter: Stop the silent misdiagnosis http://www.kingsfund.org.uk/publications/patients%E2%80%99-preferences-matter King’s Fund report on Delivering better services for people with long-term conditions: Building the house of care http://www.kingsfund.org.uk/publications/delivering-better-services-people- long-term-conditionshttp://www.kingsfund.org.uk/publications/delivering-better-services-people- long-term-conditions Gigerenzer G. Reckoning with Risk: Learning to Live with Uncertainty. Penguin, 2002. http://www.amazon.co.uk/Reckoning-Risk-Learning-Live-Uncertainty/dp/0140297863 http://www.amazon.co.uk/Reckoning-Risk-Learning-Live-Uncertainty/dp/0140297863 Gigerenzer, G. (2007). Gut feelings. London, Penguin. http://www.amazon.co.uk/Gut-Feelings-Better-Decision-Making/dp/0141015918

45. d.p.c.tomson@ncl.ac.uk Thank you