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Social Media and Chatbots Use for Chronic Disease Patients Support: Case Study from an Online Community Regarding Therapeutic Use of Cannabis

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Social Media and Chatbots Use for Chronic Disease Patients Support: Case Study from an Online Community Regarding Therapeutic Use of Cannabis MESTRADO MULTIMÉDIA - ESPECIALIZAÇÃO EM TECNOLOGIA Social Media and Chatbots use for chronic disease patients support: case study from an online community regarding therapeutic use of cannabis Alice Rangel Teixeira M 2019 FACULDADES PARTICIPANTES: FACULDADE DE ENGENHARIA FACULDADE DE BELAS ARTES FACULDADE DE CIÊNCIAS FACULDADE DE ECONOMIA FACULDADE DE LETRAS Social Media and Chatbots use for chronic disease patients support: case study from an online community regarding therapeutic use of cannabis Alice Rangel Teixeira Mestrado em Multimédia da Universidade do Porto Orientador: Carla Teixeira Lopes July 2019 © Alice Rangel Teixeira, 2019 Social Media and Chatbots use for chronic disease patients support: case study from an online community regarding therapeutic use of cannabis Alice Rangel Teixeira Mestrado em Multimédia da Universidade do Porto Approved in public by the jury President: Rui Pedro Amaral Rodrigues (Prof) External Examiner: Ana Margarida Pisco Almeida (Prof) Supervisor: Carla Alexandra Teixeira Lopes (Prof) Resumo A análise de redes sociais na área da saúde é recente e permite compreender a efetividade de políticas e práticas de saúde para a população, ajustando-as conforme(Paul & Dredze, 2017). Contudo, apesar do papel central da partilha de informação para o apoio social e emocional, no contexto das redes sociais, ainda são poucos os estudos que procuram analisar a dinâmica de produção e partilha desta informação. Este estudo analisa esta dinâmica de produção de conhecimento, tendo como caso de estudo as comunidades online de apoio ao tratamento de doenças crônicas com cannabis. O caso escolhido parte da perspetiva que as comunidades têm a produção de conhecimento como objetivo implícito dos agrupamentos, por não haver informação ou atenção ao tratamento satisfatória. Para satisfatoriamente responder às questões de inverstigação, o estudo foi dividido em três fases sequenciais, a primeira refere-se à análise das dinâmicas dos grupos, a segunda ao desenvolvimento do protótipo e a última compreende a avaliação do protótipo. Uma abordagem mista da metodologia incluiu tanto a análise qualitativa quanto a quantitativa, de forma paralela e complementar, com objetivo de solidificar os resultados observados na pesquisa. Além dos métodos de coleta de dados por inquérito e observação, inclui- se a coleta de dados através das plataformas utilizadas, tanto para a fase de análise dos grupos, quanto para a avaliação do protótipo. Um total de seis grupos foram observados por um período entre uma ano a seis meses. O protótipo do chatbot foi construído através do Dialogflow e implementado no Facebook Messenger. Trinta e seis testes com usuários foram conduzidos para avaliação do protótipo. Os principais temas discutidos envolvem principalmente a busca por experiências com o tratamento para uma condição específica na forma de relatos pessoais. Foram observados como fatores limitantes dessa dinâmica o intenso número de mensagens, a forma não estruturada do conteúdo e o limite de participantes por grupo. A partir da análise dos grupos, o protótipo foi desenvolvido com objetivo de informar a respeito da efetividade e acesso ao tratamento, bem como fornecer contatos de profissionais de saúde, grupos e associações que possam auxiliar no início do tratamento. Um estudo com utilizadores foi conduzido para avaliação do protótipo. Os resultados encontrados indicam que há a produção de conhecimento empírico a partir do compartilhamento de experiências pessoais e potencializada pelas ferramentas de grupos de redes sociais, mas limitado pela estado atual das plataformas utilizadas. A avaliação positiva do protótipo indica que chatbots podem ser uma boa alternativa para superar essas limitações. PALAVRAS CHAVE: Tecnologias de Informação e Comunicação (TICs), comportamento de busca de informações, informações de pacientes, grupos de apoio ao paciente, mídias sociais, redes sociais. Abstract The analysis of social networks and their impact on the health area is recent and allows understanding the effectiveness of health policies and practices for the population, adjusting them as necessary (Paul & Dredze, 2017). However, despite the central role of information sharing for social and emotional support, in the context of social networks, there are still few studies that seek to analyze the dynamics of production and sharing of this information. This study analyzes the dynamics of knowledge production, taking as a case study the online communities to support the treatment of chronic diseases with cannabis. The chosen case starts from the perspective that the communities of patients and caregivers of patients with chronic diseases have the production of knowledge as implicit goal of the groupings, because there is little information and access to the treatment. In order to satisfactorily answer the questions of investigation, the study was divided in three sequential phases, the first one refers to the analysis of the dynamics of the groups, the second to the development phase of the prototype and the last one comprises the evaluation of the prototype. A mixed approach to the methodology included both qualitative and quantitative analysis, in a parallel and complementary way, aiming to solidify the results observed in the research. In addition to the methods of data collection by interview, survey and observation, data from platforms were collected; for the analysis phase of the groups and for the evaluation of the prototype. A total of six groups were observed for a period of six months to one year. The chatbot prototype was built through Dialogflow and implemented in Facebook Messenger. Thirty-six user tests were conducted for prototype evaluation. A majority of caregivers and patients with chronic diseases was observed, with an active role of mothers as caregivers. The main topics discussed involve the search for experiences with the treatment for a specific condition, in the form of personal reports. It was observed as limiting factors of these dynamics the intense number of messages, the unstructured organization of the content and the limit of participants per group. From the group analysis the prototype was developed with the purpose of informing the effectiveness and ways of access the treatment; and also, to provide contacts of health professionals, groups and associations that may help in the beginning of treatment. A study with users was conducted for evaluation of the prototype. The results indicate that there is a production of empirical knowledge from the sharing of personal experiences that is potentialized by the groups features of social networks but limited by the current state of the platforms used. The positive evaluation of the prototype indicates that chatbots can be a good alternative to overcome these limitations. KEYWORDS: Information and Communication Technologies (ICTs), information seeking behavior, patient information, patient support groups, social media, social networking. Acknowledgments I would like to acknowledge the incommensurable contribute peer to peer content had in this research. This is a study about and based on user generated content; countless forums, personal blogs, social media groups are the backbone that enabled my learning process and consequently this research. As Musil pointed in 1930, in his surprisingly current novel, “in history of mankind there is no voluntary turning back” (p. 249) and while the wheels of time can never be stopped, it is up to us to appropriate of it and ensure a more open and collective future. Table of Contents 1. Introduction .......................................................................................................................... 1 1.1. Context ............................................................................................................................ 1 1.2. Problem ............................................................................................................................ 2 1.3. Research Questions .......................................................................................................... 3 1.4. Dissertation structure ....................................................................................................... 3 2. Literature Review ................................................................................................................. 4 2.1. Health Care in the Digital Era .......................................................................................... 4 eHealth ..................................................................................................................... 4 Medical Decision-Making Process........................................................................... 5 2.2. Online health communities .............................................................................................. 7 From collective knowledge to communities of experience ...................................... 7 Online Health Communities and Social Media ........................................................ 9 Social Media analysis on health subjects ............................................................... 10 Text Mining and Social Media Content Analysis................................................... 11 Topic Model and Social Media Analysis ............................................................... 12 2.3. Chatbots ......................................................................................................................... 14 eHealth Chatbots Applications
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