A recent publication in the prestigious British Medical Journal Evidence-Based Medicine analyses the limited involvement of patients in the development of guidelines for clinical practice in Latin America. The researchers who took part in the study were Luis Ignacio Garegnani, Pablo Rosón-Rodríguez, Camila Escobar and Juan Franco from the Instituto Universitario del Hospital Italiano de Buenos Aires together with Marcelo Arancibia, Nicolás Meza and Eva Madrid from University of Valparaíso’s Centro Interdisciplinario de Estudios en Salud, CIESAL.
Clinical practice guidelines are fundamental tools in promoting evidence-based decision-making in health, as they help prevent unnecessary risk, allow reasonable use of limited resources and improve the quality of healthcare. All guideline development frameworks, including the WHO manual, recommend the active participation of patients in order to take into account their values and preferences, which in turn substantially improves adherence to their recommendations.
Some of the patient inclusion methods are: a) incorporating patients or patient representatives onto the guideline drafting panels; b) searching for published evidence on patient values and preferences; c) external reviews of draft guidelines by patients and d) inviting public comment on the final published version of the guidelines.
The research provides a diagnosis of the overall situation in Latin America regarding the different ways to involve patients when making health recommendations to be included in clinical practice guidelines. For this, guidelines from Argentina, Bolivia, Brazil, Chile, Colombia, Costa Rica, Cuba, Ecuador, El Salvador, Guatemala, Honduras, Mexico, Nicaragua, Panama, Paraguay, Puerto Rico, Peru, Dominican Republic, Uruguay and Venezuela were searched online. This search methodology was used in the Medline, Embase and LILACS databases and a thorough manual search was conducted in government sites and clinical guideline repositories.
The research included the evaluation of 408 guidelines with recommendations for different pathologies. The importance given to the inclusion of values and preferences was more present in the guidelines based on the GRADE methodology (43% versus 6%).
One of the main conclusions of the research is that, despite the importance of clinical practice guidelines to optimise patient care, only a quarter of state-funded clinical practice guidelines include some system of patient participation.
The study was highlighted in an article published this week by Medscape (link article), the leading online reference site for physicians and healthcare professionals around the globe. Medscape highlighted the findings of the publication and interviewed the principal author, Luis Garegnani. In his opinion, “the idea is that patients take part throughout the entire process of development of clinical practice guidelines, because guideline developers, academics and even attending physicians do not hold the same view as patients about treatments, adverse effects and the health system. This is no easy task, however. Culturally and geographically, Latin America is a very diverse region with limited resources and patient participation can lead to additional costs”.