Incorporation of patients’ perspective in nationally developed guidelines in Latin America

Presentation video:




Oral session: Patient or healthcare consumers involvement and shared decision-making (2)


Wednesday 23 October 2019 - 11:00 to 12:30


All authors in correct order:

Garegnani L1, Rosón P1, Escobar Liquitay C2, Franco JVA1, Meza N3, Arancibia M4, Madrid E4
1 Research Department, Associate Cochrane Centre, Instituto Universitario Hospital Italiano, Argentina
2 Biblioteca Central, Instituto Universitario Hospital Italiano, Argentina
3 Cochrane Centre School of Medicine, Universidad de Valparaíso, Chile
4 Cochrane Centre School of Medicine, Universidad de Valparaíso, Interdisciplinary Centre for Health Studies (CIESAL), Universidad de Valparaíso; Biomedical Research Centre (CIB), Universidad de Valparaíso, Chile
Presenting author and contact person

Presenting author:

Luis Garegnani

Contact person:

Abstract text
Background: clinical practice guidelines (CPG) have become one of the most important tools to promote evidence-informed decision making. The guidelines for CPG released by the World Health Organization suggest that end users, and patients specifically, should be represented on CPG panels. The second domain in the AGREE (Appraisal of Guideline Research and Evaluation) instrument, stipulates that a high-quality CPG should take patients’ preferences into account. There are several methods to ensure that the perspectives of relevant stakeholders are taken into account during the different phases of development, for example:
- co-opting a patient into the guideline development group;
- searching for patients' values and preferences;
- making an external review by patients or patients' representatives;
- incorporating public comments in draft versions of the CPG.

The ideal methodological approach for the incorporation of patients' participation has not yet been established. Several studies have been conducted in the Netherlands, USA, UK, Australia, and Germany. These studies reported that few CPG incorporated patients’ perspectives and that the methods to do so were highly variable.

Objectives: to evaluate patients’ participation and the methods of patients’ participation in the development of CPG in Latin America.

Methods: we conducted a comprehensive manual search in official government websites and biomedical databases (MEDLINE, Embase, and LILACS) during December 2018. We included government-sponsored CPG with recommendations for the management of health conditions or for a healthy lifestyle from the last 10 years. Documents identified as CPG had to include a method for guideline development.

Results: we included 166 CPG from three countries. We found that 47% of CPG did not report the incorporation of patients’ values and preferences through any method although this varied greatly in each country (Table 1). One of the most common methods used in CPG was the bibliographic search for patients’ values and preferences.

Conclusions: the incorporation of patients’ perspectives, values, and preferences, varied considerably among selected countries in the region. The methods used by CPG developers were variable too and in many cases no method was used to incorporate patients’ perspective. These findings highlight the need to improve CPG development methods to incorporate patients’ perspectively systematically when drafting recommendations. The final results with the incorporation of the other countries in the region will be presented at the Colloquium.

Patient or healthcare consumer involvement: no patient or healthcare consumer was involved in this project.