Essential Medicine Lists (EMLs) are important for the prioritization and availability of medicines around the world. Since the first Model List of Essential Medicines (MLEM) from the World Health Organization in 1977, the list has expanded from 208 to 479 medicines. The availability of essential medicines is a key priority under the World Health Organization’s Universal Health Coverage agenda & the United Nation’s Sustainable Development Goals (in particular goal 3.8 Coverage of Essential Health Services). EMLs are an important tool to inform health decisions at a country-level and at least 137 countries now have their own national EML. Despite this, there is wide variability in the methods used to develop them, and the certainty of evidence of medicines included on WHO’s MLEM and national EMLs. Additionally, a lack of coordination may result in time delays in updating EMLs or unnecessary duplication of efforts between EMLs and other evidence synthesis and health decision-making paradigms, such as health guidelines. In this thesis, we seek to understand the decision-making process for EMLs with particular focus on WHO’s MLEM, and to identify and advance opportunities to coordinate their development with health guidelines. This is accomplished through three papers, which build upon each other in this sandwich thesis. Paper 1 is a qualitative interview study with EML and guideline stakeholders to better understand decision-criteria and processes in EMLs. Paper 2 evaluates, using user-experience testing, a framework for the connection of guidelines and EMLs using an Evidence-to-Decision (EtD) framework for EMLs. Paper 3 presents a stakeholder-driven Grading of Recommendations Assessment, Development and Evaluation (GRADE) Working Group concept paper exploring the conceptual challenges and opportunities of linking guidelines and EMLs using case studies on real-world implementation of this connection. / Thesis / Doctor of Philosophy (PhD) / Medicines are important for treating health conditions, and the most important medicines are called essential medicines. Essential Medicine Lists (EMLs) are created to determine what should be considered an essential medicine around the world, and also to ensure people have access to them. The number of medicines on the World Health Organization’s Model List of Essential Medicines (MLEM) has grown since it was first released, but these medicines aren’t always available to treat people who need them. Sometimes medicines that are not the most important are included on national essential medicine lists. The way that the WHO EML and national EMLs are made has been under review and criticized. Health guidelines tell people how medicines should be used, however, the connection between EMLs and health guidelines is not always consistent. Sometimes they may say different things about the same medicine. Additionally, there are differences in how EMLs and guidelines are established, and those involved do not always work with each other. In this thesis, I try to understand how decisions about which medicines are included in EMLs are made, and how they connect to health guidelines. Chapter 1 is an introduction to the topic. Chapter 2 asks experts about the decision-making process for EMLs. In chapter 3, we change a tool for guidelines to help connect guideline and EML decisions and ask for feedback regarding improvements. Chapter 4 presents the work with a group of guideline experts to present problems and suggest ways to overcome them to make EMLs and health guidelines better connected.

Esta pesquisa apresenta o desenvolvimento de método de busca e recuperação de informações em bases de dados especializadas para produção do conhecimento científico na área da Saúde, com ênfase na Saúde Baseada em Evidências. Recorremos, neste trabalho, a diferentes metodologias considerando as especificidades de cada etapa: pesquisa exploratória, método hipotético dedutivo e estudo de caso empírico qualitativo. Mobilizamos os fundamentos teórico-metodológicos da Ciência da Informação e da Saúde nos domínios da Organização e Recuperação da Informação e do Conhecimento, Web Semântica, Saúde Baseada em Evidências e Metodologia Científica, assim como realizamos dois experimentos: estudo de caso em Ortopedia e Traumatologia no sentido de identificar e estabelecer critérios para busca, recuperação, organização e seleção de informações de modo que possam integrar parte da metodologia de trabalhos científicos na área da Saúde; e análise dos tipos de busca e recuperação e dos mapeamentos entre Sistemas de Organização do Conhecimento (SOC) propostos no Metatesauro no escopo da Unified Medical Language System (UMLS) da US National Library of Medicine e no BioPortal da National Center for Biomedical Ontology, ambos na área biomédica. O UMLS disponibiliza acesso a 151 SOC, e o BioPortal, um conjunto de 302 ontologias. Apresentam-se propostas para construção de estratégias de busca com uso de Sistemas de Organização do Conhecimento mapeados e interoperados, bem como para realização de pesquisas bibliográficas para elaboração de trabalhos científicos na área da Saúde. / This research presents the development of method for search and information retrieval in specialized databases aiming the production of scientific knowledge in healthcare, with emphasis on Evidence-Based Health. We have used, in this work, different techniques considering the specificities of each stage: exploratory research, hypothetical deductive method and qualitative empirical case study. It mobilizes the theoretical and methodological foundations in Information Science and Health, appling them to areas as knowledge organization and information retrieval, Semantic Web, Evidence-Based Health and Scientific Methodology. Two experiments were performed: a case study in Orthopedics and Traumatology in order to identify and establish criterions for search, retrieval, organization and selection of information, so that these criterions can integrate part of the methodology of scientific work in healthcare; and analysis of kinds of search and retrieval and mappings on Knowledge Organization Systems-KOS available in Metathesaurus, considering the scope of the Unified Medical Language System (UMLS) of the US National Library of Medicine (NLM), and in the BioPortal National Center for Biomedical Ontology, both in the biomedical field. The UMLS provides access to 151 KOS, and the BioPortal provides a set of 302 ontologies. We presented proposals for construction of search strategies by using Knowledge Organization System mapped and interoperate as well as for conducting literature searches for preparation of scientific papers in healthcare.

Esta pesquisa apresenta o desenvolvimento de método de busca e recuperação de informações em bases de dados especializadas para produção do conhecimento científico na área da Saúde, com ênfase na Saúde Baseada em Evidências. Recorremos, neste trabalho, a diferentes metodologias considerando as especificidades de cada etapa: pesquisa exploratória, método hipotético dedutivo e estudo de caso empírico qualitativo. Mobilizamos os fundamentos teórico-metodológicos da Ciência da Informação e da Saúde nos domínios da Organização e Recuperação da Informação e do Conhecimento, Web Semântica, Saúde Baseada em Evidências e Metodologia Científica, assim como realizamos dois experimentos: estudo de caso em Ortopedia e Traumatologia no sentido de identificar e estabelecer critérios para busca, recuperação, organização e seleção de informações de modo que possam integrar parte da metodologia de trabalhos científicos na área da Saúde; e análise dos tipos de busca e recuperação e dos mapeamentos entre Sistemas de Organização do Conhecimento (SOC) propostos no Metatesauro no escopo da Unified Medical Language System (UMLS) da US National Library of Medicine e no BioPortal da National Center for Biomedical Ontology, ambos na área biomédica. O UMLS disponibiliza acesso a 151 SOC, e o BioPortal, um conjunto de 302 ontologias. Apresentam-se propostas para construção de estratégias de busca com uso de Sistemas de Organização do Conhecimento mapeados e interoperados, bem como para realização de pesquisas bibliográficas para elaboração de trabalhos científicos na área da Saúde. / This research presents the development of method for search and information retrieval in specialized databases aiming the production of scientific knowledge in healthcare, with emphasis on Evidence-Based Health. We have used, in this work, different techniques considering the specificities of each stage: exploratory research, hypothetical deductive method and qualitative empirical case study. It mobilizes the theoretical and methodological foundations in Information Science and Health, appling them to areas as knowledge organization and information retrieval, Semantic Web, Evidence-Based Health and Scientific Methodology. Two experiments were performed: a case study in Orthopedics and Traumatology in order to identify and establish criterions for search, retrieval, organization and selection of information, so that these criterions can integrate part of the methodology of scientific work in healthcare; and analysis of kinds of search and retrieval and mappings on Knowledge Organization Systems-KOS available in Metathesaurus, considering the scope of the Unified Medical Language System (UMLS) of the US National Library of Medicine (NLM), and in the BioPortal National Center for Biomedical Ontology, both in the biomedical field. The UMLS provides access to 151 KOS, and the BioPortal provides a set of 302 ontologies. We presented proposals for construction of search strategies by using Knowledge Organization System mapped and interoperate as well as for conducting literature searches for preparation of scientific papers in healthcare.