Análise da tomada de decisão cocriada entre pacientes da Síndrome de Behçet e seus stakeholders

Abstract

With the purpose of analyzing the co-creation of value in decision-making that takes place in the relationships of patients with Behçet's Syndrome with their multiple stakeholders, both in medical-hospital environments and in any and all environment that can provide quality of life to the patient, this thesis is a theoretical and methodological contribution of the science of health administration, proposing the theoretical-methodological model of Co-created Decision Making (TDCC). The theoretical-methodological model developed is a theoretical interaction between the theories of Value Co-creation and Stakeholders with Shared Decision Making. It analyzes the relationships between patients and their stakeholders, with a focus on co-creating diagnostic and treatment decisions that best reflect health conditions, well-being and specific priorities for each patient. To this end, it proposes and applies an analysis model focused on the experiences of patients with Behçet's Syndrome in Brazil and their relationships with their stakeholders, with the patient as an active participant in the entire health/disease/care process. The thesis was built in the form of four complementary scientific articles with different methodologies, based on the TDCC. Thus, it was possible to develop the conceptual model of the theory, propose an analysis model and apply this model, first in a single case study, based on autoethnography and content analysis of documents, videos and interviews and, later, in a study with multiple cases, through its application in a group of patients on WhatsApp, through a netnography and content analysis of interviews. In the two applications of the analysis model, fourteen different types of stakeholders who co-create value with the patient were identified. The most relevant patient relationship is with physicians, which were both positive and negative. Other stakeholders identified in the survey were: social media, family, governments and public policies, work, health providers, consumer rights, friends, education, health professionals, other patients, patient groups, pharmaceutical market, PAP professionals. For co-created decision-making in the relationships between patients and their stakeholders, three key elements were identified: patient engagement; the four principles of value co-creation (dialogue, access, risk assessment and transparency); consider the patient as a whole. Seven main dilemmas experienced by patients were highlighted: disruption caused by the disease; difficulty in diagnosing; people who do not understand the disease; ignorance of the disease; newly diagnosed diseases; not being heard by doctors; disease recognition. The patients' suggestions for the co-creation of value in decision-making were, mainly, for more research and dissemination of information and knowledge about BS; and that the disease is recognized in public policies in Brazil to provide comprehensive care to patients and access to high-cost medications. Thus, this thesis represented an iterative process with the application of the model to the research from which it derived, also providing discussions about the proposed model itself, which enabled analyzes from multiple perspectives, both the patient's perspective and that of the different stakeholders.