Dr Angela Coulter, Director of Global Initiatives, Foundation for Informed Medical Decision Making, spoke at The King's Fund's 'Reducing unwarranted variations in health care' conference, giving her expert opinion on how to give the best value for patients: with the right intervention, in the right place, at the right time with the right level of involvement.

1. 1 Best Value for Patients Angela Coulter, PhD Director of Global Initiatives Foundation for Informed Medical Decision Making acoulter@fimdm.org www.informedmedicaldecisions.org

2. 2 Overview Shared decision-making in acute conditions in long-term conditions Implementation challenges

3. The clinical decision problem Patients: making decisions in the face of avoidable ignorance Clinicians: poorly ‘diagnosing’ patients’ preferences leading to underuse, overuse and waste Poor decision quality

4. What we have learnt Paternalistic or directive practice styles... Create dependency Discourage self-care Ignore preferences Undermine confidence Do not encourage healthy behaviours 4

5. Shared decision-making A process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences.

6. 6 Sharing expertise Clinician Diagnosis Disease aetiology Prognosis Treatment options Outcome probabilities Patient Experience of illness Social circumstances Attitude to risk Values Preferences

7. Key components of shared decision-making Reliable, balanced, evidence-based information outlining treatment options, outcomes and uncertainties. Decision support counselling with clinician or health coach to clarify options and preferences. System for recording, communicating and implementing patient’s preferences.

8. When is it appropriate? When people face major health care decisions where there is more than one feasible option. When people with chronic conditions want to be involved in planning their care, adopting healthier lifestyles, and enhancing their ability to self-manage.

9. 9 What patients need to know Is there more than one way to treat my condition? Will treatment relieve the symptoms? Benefits and harms? Is treatment essential? Recovery time? Impact on quality of life? What can I do to help myself?

10. Patient decision aids Information on….. condition treatment options outcomes with and without treatment uncertainties values clarification balanced evidence-based

11. Variations in hysterectomy rates in England Hysterectomy is (usually) discretionary Population-based hysterectomy rates vary more than 3x between local areas Patients’ values and preferences should influence decisions 11

12. 12 Decision aid + decision support Helped patients form preferences Reduced hysterectomy rates Increased long-term satisfaction Information + preference elicitation was cost-effective Kennedy et al. JAMA 2002; 288: 2701-8

13. 13 Decision aid + coaching in gynaecology

15. more accurate risk perceptions

16. greater comfort with decisions

17. greater participation in decision-making

18. fewer people remaining undecided

19. fewer patients choosing major surgeryO’Connor et al. Cochrane Database of Systematic Reviews, 2009

20. Chronic care model HEALTH SYSTEM COMMUNITY Health Care Organisation Resources and Policies ClinicalInformationSystems Self-Management Support DeliverySystem Design Decision Support Prepared, Proactive Practice Team Informed, Activated Patient Productive Interactions Improved outcomes

21. Collaborative care planning in diabetes

22. The clinic experience Access & communication Named contact Registration, recall, review, and follow up IT templates Organisational processes Professional ’ s Professional ’ s Professional ’ s Individual ’ s story Individual ’ s story Individual ’ s story story story story Awareness of process & options Knowledge Knowledge Knowledge Awareness of approach to self-management Emotional Emotional Emotional Social Clinical Social Social Clinical Clinical Behavioural Behavioural Behavioural and health and health and health beliefs beliefs beliefs HCP committed to partnership working Engaged, informed patient Share and discuss information Share and discuss information Share and discuss information Structured education/ Information Consultation skills / competencies Goal Setting Goal Setting Goal Setting Access to own records Action Action Action Action Action Action Action Action Action Action Action Action Multi-disciplinary team working Pre-consultation results Knowledge of local options Emotional & psychological support Clinical expertise Commissioning - The foundation

23. Informed, empowered patients Have the knowledge, skills and confidence to manage their own health and healthcare, And they… make healthy lifestyle choices tend to adhere to medication regimes make informed and personally relevant decisions about their treatment and care use less health care Mosen et al 2007

24. Changing the culture of care Help patients understand their options Give information about risks, benefits, consequences and uncertainties Support patients to articulate their values and preferences Reach a mutually agreed decision on the most appropriate course of action 19

25. What are the barriers? Time/resources Inflexible systems Clinical culture

26. What could help? Clinical leadership, training and skills Social marketing Identifying decision points and integrating decision support into clinical pathways System for recording and acting on patients’ preferences Monitoring and feedback Incentives for clinicians Strong social networks and community support Supportive public policy

28. Clearer risk communication

29. Improved health literacy

30. More appropriate decisions

31. Fewer unwanted treatments

32. Improved confidence and self-efficacy

33. Improved health behaviours

34. Safer care

35. Greater compliance with ethical standards

36. Reduced costs

37. Less litigation