Dunja Dreesens

21 they really are. This outcome led to the establishment of a new G-I-N Working Group: WG Appraising and Including Different (AID) Knowledge. This working group aims to identify methods and promising initiatives for appraising and including a wider range of knowledge sources in CPGs (46-48). Another outcome of the review was the lack of public and patient involvement in CPG development and implementation. This issue is addressed by the G-I-N Working Group Public which already exists longer (49). The dissatisfaction with CPGs, and other drawbacks such as keeping CPGs up to date, lack of patient perspective, and attention to organisation of care, has led to the development of other types of tools for knowledge translation and decision support. Some examples: care standards are written from a patient perspective and include organisation of care (50); clinical pathways are local complex interventions for mutual decision making and care processes (51); viewpoints offer quickly developed guidance when the evidence is not (fully) available yet (52); and patient decision aids help patients to become involved in decision making about their care and/or treatment by providing information about the options and outcomes, and clarify personal values (53). The world of shared decision-making Shared decision-making has been advocated as the ideal model of decision-making in the medical encounter (54-56). The concept got a boost in 1999 when Charles et al described three approaches to decision-making: paternalistic, shared and informed. In the first one, the clinician provides information about the options, deliberates and decides. In the latter, the clinician provides information about the options, but the patient deliberates and decides. In the shared approach both exchange information – the clinician about the options, the patient about what matters most to her or him –, both consider the pros and cons, and the final decision involves the patient as much as possible (and as much as the patient desires) (57). Other boosts were the (repeated) Cochrane reviews of patient decision aids showing the benefits of these tools towards SDM (58) and the realisation of the International Patient Decision Aid Standards (IPDAS) by O’Connor et al (59, 60). O’Connor and Wennberg pushed matters further along when they made a plea for informed patient choice (instead of informed consent). Governments took a keen interest as research showed that PDAs not only improve the quality of decision making but might also have an effect on health costs as informed patients in general chose more conservatively (35, 61). Governments, however, also acknowledged that if they wanted to pay tribute to all the domains of quality of care, and especially the domain patient-centeredness (62), formal patient engagement is essential (63-65) and SDM is one way to achieve this. Patient-centeredness is “providing care respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (62). Furthermore, patients were adamantly calling for a power shift in health care (66). Especially because even though SDM was receiving more attention and gaining momentum, considering patient preferences and values was still not standard operating procedure yet, although most clinicians thought they were involving patients in deciding about their care (63, 67-69). The increased attention to the involvement of patients in the care process and decision-making has led to new tools. Examples of these include patient decision aids, option grids, decision boxes, question prompt lists, patient education, and patient versions of clinical practice guidelines (7). Chapter 1