User centred care GPs’ perspective CAPHRI 02-04-12

1. User centred careGPs’ perspectiveCAPHRI 02-04-12 Prof Trudy van der Weijden Dept General Practice Programme leader CAPHRI “Implementation of evidence”

2. Content • Definitions • User-centred research (evidence) • User-centred knowledge (guidelines) • User-centred care (performance) • Key messages

3. Key messages • User-centred care has many faces • Providers and patients are users of knowledge, new era of democratising knowledge • Collective and individual preferences • From provider- to dialog-driven care

4. Content • Definitions • User-centred research (evidence) • User-centred knowledge (guidelines) • User-centred care (performance) • Key messages

5. Definitions user-centred care, patient centredness • Respect, autonomy, dignity • Accessible, confidential, continuity of care, holistic, emotional supportive • Care is responsive to patient preferences, needs, and values, ensuring that patient values guide all clinical decisions IOM, WHO, Picker Institute, Berwick, Mead, NPCF etc

6. Definition user-centred care • multidimensional concept • difficult to grasp • difficult to measure • easy to acknowledge

7. Stalmeier PF, et al. J Clin Oncol 2007;25:3096-100. Early-stage prostate cancer High radiation doses? Low radiation doses?

8. “All I deliver is user-centred care!” • Videos of consultations • 25 patients early-stage prostate cancer • 10 radiation-therapists • Mean 48 minutes (± 16 min) • >1 option discussed with 10 patients (option no radiation 0x) • “Understood?” after 42m., “Questions?” after 45m. Pieterse A, et al. Patient Education and Counseling 2011;85:e251–e259

10. Participation ladder (Arnstein 1969) Patients in control Acting together Deciding together Consultation Information Degree of control

11. Content • Definitions • User-centred research (evidence) • User-centred knowledge (guidelines) • User-centred care (performance) • Key messages

12. Participation in research project It’s LiFe Jos Donkers. “Former director Marriott Hotels Int, in 1978 diagnosed with severe COPD.” Ina van Opstal. “I work for the Diabetes Association as a diabetes experiential expert, and health care advisor.”

13. Participation in research confer.

14. Patients in the lead in research

15. Content • Definitions • User-centred research (evidence) • User-centred knowledge (guidelines) • User-centred care (performance) • User-centred change (implementation) • Key messages

16. 2% 100% cardiologist GP

17. Patient participationin guideline development patient

18. Med Dec Making 2011

19. GIN Guidelines International Network

21. User-centred knowledge • Guidelines new style: • All stakeholders involved (patients!) • Declaration of interests • Short: < 10-15 recommendations • Easy accessible for patients • All relevant evidence • Patient decision aids linked to preference-sensitive recommendations Van der Weijden T, et al. J Clin Epid 2012 Jan

22. All relevant evidence

23. JOEM 2012

25. Content • Definitions • User-centred research (evidence) • User-centred knowledge (guidelines) • User-centred care (performance) • Key messages

26. Medical decision making Guideline: Interpretation evidence Sackett BMJ 1996 Patient: co-morbidity genetic predisposition preferences Setting: expertise organisation financial conditions

29. SDM Charles et al. Soc Sci Med 1999;49:651-61. Elwyn G et al. Med Decis Making 2010;30:701e11. clinician and patient clinician and patient

30. IMPALA study Koelewijn et al. Prev Med 2010;50;35 Koelewijn et al. CMAJ 2009;181:E267 Koelewijn et al. BMC Health Serv Res 2008;8;9

31. BMJ 2009;339:485

32. http://epatientdave.com

33. 65% of patients first visit google before ….

34. User-centred care GPs role Moser A et al. Pat Educ Couns 2010;78:365-71.

35. Key messages • User-centred care has many faces • Providers and patients are users of knowledge, new era of democratising knowledge • Collective and individual preferences • From provider- to dialog-driven care

36. Uncertainty “Uncertainty creeps into medical practice through every pore. Whether a physician is defining a disease, making a diagnosis, selecting a procedure, observing outcomes, assessing probabilities, assigning preferences, or putting it all together, he is walking on very slippery terrain. It is difficult for nonphysicians, and for many physicians, to appreciate how complex these tasks are, how poorly we understand them, and how easy it is for honest people to come to different conclusions.” Eddy DM. Health Aff (Millwood) 1984;3:74–89.

37. Review Cochrane Library • Knowledge (options, pros cons) • Involvement in decision • Preference => decision • Patient adherence • Invasive treatments • Health • Anxiety / consultation length ≈ Stacey D, et al. Cochrane Library 2011. = =

38. Three sources of uncertainty • probability (the risk of a future event) • ambiguity (uncertainty about the strength or quality of risk estimates) • complexity (uncertainty arising from the complexity of the information on risk, depends on personal judgments) Han PK, et al. Med Dec Making 2011 Jan

40. Impl Science 2011;6:45