Patients’ participation in government-sponsored guidelines in Latin America

Blog entry written on: Patients’ participation in government-sponsored guidelines in Latin America: a cross-sectional study, (bmjebm-2020-111530).

Authors: Luis Ignacio Garegnani, Nicolás Meza, Pablo Rosón-Rodriguez, Camila Micaela Escobar-Liquitay, Marcelo Arancibia, Eva Madrid, Juan Victor Ariel Franco


Clinical practice guidelines (CPGs) have become important tools in the promotion of evidence-informed decision-making, as they prevent unnecessary risks, allow reasonable use of limited resources, reduce inadequate clinical variability, and improve the quality of healthcare systems and services.

Guidelines for the development and assessment of evidence-based CPGs recommend active patients’ participation to incorporate patients’ values and preferences, which may help make CPGs more patient-centred and improve adherence to recommendations. It is also argued that patients’ involvement in guidelines makes decision-making more democratic, leading to better quality decisions and tailor-made services, hence broadening the perspective of decision-makers, healthcare professionals and researchers.

Latin America reaches up to 800 million inhabitants —13% of the world population— with different healthcare systems fragmented into the public sector, private sector and social security. The public sector is responsible for the health coverage of 60 to 100% of the population. Government-sponsored CPGs – both financed and produced by government offices – usually have important regulatory and budgetary implications, especially in the context of limited resources and inequity in access to healthcare in our region. They are also widely disseminated, implemented by healthcare practitioners and often supported by local scientific societies in the region.

Our study “Patients’ participation in government-sponsored guidelines in Latin America: A cross-sectional study”(bmjebm-2020-111530.R3) aimed at assessing patients´ participation in government-sponsored CPGs developed in Latin America.

We identified 408 CPGs from Argentina, Brazil, Chile, Colombia, Cuba, Ecuador, Honduras, México, Perú, and Uruguay. Topics covered by CPGs were highly variable, ranging from breast cancer screening, Chagas disease and critical care to endocrinology and rare diseases. Publication dates covered the entire ten years’ period considered from 2009 to 2019.

We found that 23% of CPGs (n=95) reported at least one method of patients’ participation, while 77% of them (n=313) did not. This proportion varied across countries. The methods used for patients’ participation were also highly variable: 46% CPGs incorporated patients in the panel, 81% searched for evidence of patients’ values and preferences, 43% used an external review of the draft recommendations by patients, and 38% used public comments. While some CPGs included more than one method for patients’ participation, only 2% included other methods for stakeholders’ participation, such as external review by experts and the public, presentation of guidelines in an open event with comments and observations, and debates among interested parties including.

These findings highlight the need to improve CPG development methods in Latin America to incorporate patients’ values and preferences systematically when drafting recommendations. It might be necessary to allocate additional resources on developing primary research on patients’ values and preferences and on methods for their incorporation in CPGs. Although countries incomes vary widely, along with available budgets for research or CPGs development, the potential benefits in the quality of healthcare systems and services that may arise from end-users targeted CPGs might worth the effort.


Blog author:

Luis Garegnani.

PT, MSc(c). luisgaregnani@gmail.com .+541164537160. Instituto Universitario del Hospital Italiano. Potosí 4265, C1199 Ciudad Autónoma de Buenos Aires, Argentina.

Conflicts of interest: I declare I have no conflict of interest.


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