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Patients’ participation in government-sponsored guidelines in Latin America: a cross-sectional study
  1. Luis Ignacio Garegnani1,
  2. Nicolás Meza2,
  3. Pablo Rosón-Rodriguez1,
  4. Camila Micaela Escobar-Liquitay1,
  5. Marcelo Arancibia2,
  6. Eva Madrid2,
  7. Juan Victor Ariel Franco1
  1. 1Research Department, Instituto Universitario del Hospital Italiano de Buenos Aires, Buenos Aires, Argentina
  2. 2Interdisciplinary Centre for Health Studies CIESAL, Universidad de Valparaíso, Cochrane Chile, Associate Centre Universidad de Valparaiso, Valparaiso, Chile
  1. Correspondence to Luis Ignacio Garegnani, Instituto Universitario del Hospital Italiano de Buenos Aires, Buenos Aires, Argentina; luisgaregnani{at}gmail.com

Abstract

Background It is recommended that patients actively participate in clinical practice guideline (CPG) development, which allows consideration of their values and preferences and improves adherence to recommendations. The development of CPGs throughout Latin America is variable and diverse, and the inclusion of patients’ participation is unknown.

Objectives To evaluate the methods of patients’ participation in government-sponsored CPGs in Latin America, the type of CPG development and the use of Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methods.

Design Cross-sectional study. We included CPGs developed over the last 10 years through a comprehensive hand search in official national government websites and biomedical databases.

Main outcome measure The type of patients’ participation was coded according to five predefined categories. We also report the proportion of application of GRADE methods.

Results We included 408 CPGs from 10 countries: 74% (n=303) were de novo development, 13%(n=55) used an adaptation method and 10%(n=41) used both adaptation and de novo methods. Only 45% (n=185) applied the GRADE approach, ranging from 14% (n=12) of CPGs in Brazil to 89% (n=56) of CPGs in Colombia. Only 23% (n=95) of CPGs included at least one method of patients’ participation. Mexico was one of the largest CPG producers (100 CPGs), but none included methods of patients’ participation; in turn, in countries with lower production of government-sponsored CPGs, patients’ participation was found in almost 88%. Guidelines using the GRADE approach were more likely to use methods of patients’ participation. These methods were highly variable: 46% (n=44) incorporated patients in the panel, 81% (n=77) searched for evidence about patients’ values and preferences, 43% (n=39) used an external review of the draft recommendations by patients, 38% (n=36) used public comments, and 2% included other methods for stakeholders’ participation.

Conclusion Only one quarter of government-sponsored CPGs in the Latin American region incorporated a method for patients’ participation, which varied considerably across the selected countries. These findings highlight the need to improve CPG development methods to systematically incorporate patients’ values and preferences when drafting recommendations.

  • evidence-based practice
  • patient care
  • methods
  • health care quality
  • access
  • evaluation

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Footnotes

  • Twitter @nicolasmezac, @micaelaescb

  • Contributors LIG and JVAF planned the research, extracted data from CPGs and wrote the first draft of the manuscript. NM and EM extracted data from CPGs, revised the first draft of the manuscript and wrote part of the results and conclusion sections. PR-R extracted data form CPGs. CME-L planned and conducted the search strategies. MA extracted data from CPGs and revised the manuscript. All authors reviewed and approved the manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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