Health data activism

• Autor(a) principal: Leite, Francisca Roios da Costa
• Data de Publicação: 2022
• Tipo de documento: Dissertação
• Idioma: eng
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: http://hdl.handle.net/10071/28573
• topic: Health; Dados médicos -- Medical data; Activism; Patient; Associativismo -- Associations; Digital; Saúde; Ativismo; Paciente

Patients need to be made aware of their right to access their own health data, as this is something that belongs to them. The role of associations is fundamental in transmitting this information to patients. Thus, health data activism comes to promote the safety of users, showing them this very right, in the formation of this new concept. Thus, the focus of the thesis is the promotion of health data and the creation of an (ambitious) model of how patient organisations can innovate and promote the rights associated with the use and access to health data (health data activism). In this research, the methodology to be followed will be questionnaires and interviews to the Organisations/Associations, and it can be defined as a thematic content analysis. In this way, we can classify that in this project we will have both a qualitative and quantitative analysis, but mainly qualitative. The data of the study was collected using qualitative methods such as questionnaires and interviews. The data analysis process of the study involved descriptive statistical analysis for the questionnaires, while in-depth content analysis was done for the interviews. The results obtained were collected through the 229 associations contacted, 27 replied to the questionnaire, in which 13 of them agreed to do an interview. After collecting all the inputs from the results, one can define the concept "Health Data Activism" as a movement that captures an action and efforts of a person or an organization/association can be taken in promoting the rights of access and better use of health data, how to use it and the value that can be extracted from their health data. Identify who are the key actors in the health system that relate to health data (e.g., digital health agency, research agencies, etc.) to engage them in the priorities of health data activism: easy access to health data and that the exploitation of the value of the data is promoted and the value generated is returned to patients.