User centred care GPs’ perspective CAPHRI Prof Trudy van der Weijden Dept General Practice Programme leader CAPHRI “Implementation of evidence”

School for Public Health and Primary Care CAPHRI Content Definitions User-centred research (evidence) User-centred knowledge (guidelines) User-centred care (performance) Key messages

School for Public Health and Primary Care CAPHRI 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

School for Public Health and Primary Care CAPHRI Content Definitions User-centred research (evidence) User-centred knowledge (guidelines) User-centred care (performance) Key messages

School for Public Health and Primary Care CAPHRI 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

School for Public Health and Primary Care CAPHRI Definition user-centred care –multidimensional concept –difficult to grasp –difficult to measure –easy to acknowledge

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

School for Public Health and Primary Care CAPHRI “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

School for Public Health and Primary Care CAPHRI

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

School for Public Health and Primary Care CAPHRI Content Definitions User-centred research (evidence) User-centred knowledge (guidelines) User-centred care (performance) Key messages

School for Public Health and Primary Care CAPHRI 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.”

School for Public Health and Primary Care CAPHRI Participation in research confer.

School for Public Health and Primary Care CAPHRI Patients in the lead in research

School for Public Health and Primary Care CAPHRI Content Definitions User-centred research (evidence) User-centred knowledge (guidelines) User-centred care (performance) User-centred change (implementation) Key messages

100% 2% cardiologistGP

School for Public Health and Primary Care CAPHRI Patient participation in guideline development patient

School for Public Health and Primary Care CAPHRI Med Dec Making 2011

School for Public Health and Primary Care CAPHRI GIN Guidelines International Network

School for Public Health and Primary Care CAPHRI

User-centred knowledge Guidelines new style: –All stakeholders involved (patients!) –Declaration of interests –Short: < 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

School for Public Health and Primary Care CAPHRI All relevant evidence

School for Public Health and Primary Care CAPHRI JOEM 2012

School for Public Health and Primary Care CAPHRI

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

School for Public Health and Primary Care CAPHRI Medical decision making Guideline: Interpretation evidence Patient: co-morbidity genetic predisposition preferences Setting: expertise organisation financial conditions Sackett BMJ 1996

School for Public Health and Primary Care CAPHRI PaternalismInformed patient Information- transfer Deliberationclinicianpatient Decision making clinicianpatient

School for Public Health and Primary Care CAPHRI SDM PaternalismSDMInformed patient Information- transfer Deliberationclinicianpatient Decision making clinicianpatient clinician and patient Charles et al. Soc Sci Med 1999;49: Elwyn G et al. Med Decis Making 2010;30:701e11.

School for Public Health and Primary Care CAPHRI 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 IMPALA study

School for Public Health and Primary Care CAPHRI BMJ 2009;339:485

School for Public Health and Primary Care CAPHRI

School for Public Health and Primary Care CAPHRI 65% of patients first visit google before ….

School for Public Health and Primary Care CAPHRI User-centred care GPs role Moser A et al. Pat Educ Couns 2010;78:

School for Public Health and Primary Care CAPHRI 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

School for Public Health and Primary Care CAPHRI 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.

School for Public Health and Primary Care CAPHRI 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 = = ≈

School for Public Health and Primary Care CAPHRI 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

School for Public Health and Primary Care CAPHRI

Impl Science 2011;6:45