Improving the use of research evidence in guideline development: 10. Integrating values and consumer involvement

Abstract

Background: The World Health Organization (WHO), like many other organisations around the world, has recognised the need to use more rigorous processes to ensure that health care recommendations are informed by the best available research evidence. This is the 10 th of a series of 16 reviews that have been prepared as background for advice from the WHO Advisory Committee on Health Research to WHO on how to achieve this.

Use of evidence in WHO recommendations

“…the relative importance or worth of the consequences (benefits, harms and costs) of a decision. 18 Using data about potential harms was only mentioned in relation to clinical interventions, particularly pharmaceuticals, and not for public health or policy While directors were not asked specifically about group processes, many volunteered descriptions that suggested that these processes were not particularly structured with respect to group composition, format or rules. The directors' descriptions suggested that participants were implicitly weighing evidence of effects, harms, and costs along with values and many other types of information (e.g., surveys, resistance patterns, other epidemiological data, availability of interventions, country experiences, political considerations, cultural differences, ethical considerations, and "undocumented knowledge").…”

“…Processes that allow for the explicit incorporation of these other types of information, particularly values, have (like systematic reviews) emerged as central to the development of recommendations. [14][15][16][17][18] Moving from evidence to recommendations requires judgements, particularly judgements about goals and about the balance between the desirable and undesirable consequences of choosing one option over another to achieve these goals.…”

From the EBM pyramid to the Greek temple: a new conceptual approach to Guidelines as implementation tools in mental health

“…A series of biases related to this challenge have been enumerated Rosner, 2012;SalvadorCarulla et al 2013;Greenhalgh et al 2014Greenhalgh et al , 2015Fernandez et al 2015;Bingeman, 2016). Increasing emphasis has been placed on the involvement of consumers in the development of guidelines (Schunemann et al 2006;Nilsen et al 2010;Guideline International Network (GIN), 2015). Other authors have called for improving implementation strategies, for developing new tools and frameworks to support use of guidelines in the real world (Shiffman et al 2005;Doherty, 2006;Francke et al 2008;Hakkennes & Dodd, 2008;Gagliardi et al 2011;Brouwers et al 2015;Fleuren et al 2015); and to incorporate the analysis of the context and the impacts of guideline implementation in individual and population outcomes (Damschroder et al 2009;Kirk et al 2016).…”

How Well Do Guidelines Incorporate Evidence on Patient Preferences?

“…An advisory report to the World Health Organization appreciates that differing preferences can lead to different CPG recommendations and states that "Values should always be considered in making recommendations…" 19 . Owens recognizes that "Because differences in patients' preferences may lead to differences in the preferred therapy, a clinical practice guideline that does not consider patients' preferences may provide recommendations that are not optimal" 20 .…”