Privacy and Trust in Healthcare IoT Data Sharing: A Snapshot of the Users’ Perspectives

Background: Healthcare services in Canada are slowly shifting from in-hospital care to more patient-centred, home-care services. Collecting and sharing personal data from individuals via Internet of Things (IoT) devices is a critical part of this change that potentially leads to better decision-making and better support for patients from healthcare providers. However, there are challenges that come from using technology, including concerns around trust in organizations holding individuals’ data, as well as privacy and security related to data sharing that needs to be considered as part of this new model of care. Objective: This study seeks to investigate users' trust in sharing their data collected using healthcare IoT devices via different types of organizations. Methods: This research project leveraged a literature review and online questionnaires to understand how general users of IoT for Health trust different types of organizations (large companies, government, healthcare providers, and insurance companies). A total of 400 participants were recruited using Mechanical Turk for the online questionnaire, using a between-subjects design. Each participant answered questions about one type of organization, where a scenario related to the use of different IoT technologies, information about data sharing and a list of privacy concerns were presented. Based on this scenario, participants were asked to answer 16 trust-related questions. Results were analyzed using Analysis of Variance (ANOVA), followed by post-hoc comparisons using the pairwise t-test with the Bonferroni correction. Results: The study showed no significant differences in regards to privacy concerns (LConcern) in Canada, United States (USA), and Europe (F (2, 389) = 0.736, P = .480). Overall levels of trust (LTrust) in the USA varied significantly between large companies, government, healthcare providers, and insurance companies (F (3, 388) = 10.107, P < .05). The same results were observed in Canada with a significant difference between the four types of organizations (F (3, 125) = 6.882, P < .05), USA (F (3, 128) = 4.488, P =.05), and in Europe, as well (F (3, 127) = 4.451, P < 0.05). Conclusion: Initial evidence supports differences in users' perception of trust in healthcare IoT data sharing among the aforementioned types of organizations and levels of concern amongst users regarding privacy and data ownership. Differences in the perception of trust were also identified between the different regions of the participants. Future research using more specific types of organization and larger samples for each age group are needed to fill knowledge gaps. In addition, further research is also needed to understand how external factors can affect user’s levels of trust and acceptance of healthcare IoT with potential consequences for the implementation of new healthcare delivery models

Políticas de Copyright de Publicações Científicas em Repositórios Institucionais: O Caso do INESC TEC

A progressiva transformação das práticas científicas, impulsionada pelo desenvolvimento das novas Tecnologias de Informação e Comunicação (TIC), têm possibilitado aumentar o acesso à informação, caminhando gradualmente para uma abertura do ciclo de pesquisa. Isto permitirá resolver a longo prazo uma adversidade que se tem colocado aos investigadores, que passa pela existência de barreiras que limitam as condições de acesso, sejam estas geográficas ou financeiras. Apesar da produção científica ser dominada, maioritariamente, por grandes editoras comerciais, estando sujeita às regras por estas impostas, o Movimento do Acesso Aberto cuja primeira declaração pública, a Declaração de Budapeste (BOAI), é de 2002, vem propor alterações significativas que beneficiam os autores e os leitores. Este Movimento vem a ganhar importância em Portugal desde 2003, com a constituição do primeiro repositório institucional a nível nacional. Os repositórios institucionais surgiram como uma ferramenta de divulgação da produção científica de uma instituição, com o intuito de permitir abrir aos resultados da investigação, quer antes da publicação e do próprio processo de arbitragem (preprint), quer depois (postprint), e, consequentemente, aumentar a visibilidade do trabalho desenvolvido por um investigador e a respetiva instituição. O estudo apresentado, que passou por uma análise das políticas de copyright das publicações científicas mais relevantes do INESC TEC, permitiu não só perceber que as editoras adotam cada vez mais políticas que possibilitam o auto-arquivo das publicações em repositórios institucionais, como também que existe todo um trabalho de sensibilização a percorrer, não só para os investigadores, como para a instituição e toda a sociedade. A produção de um conjunto de recomendações, que passam pela implementação de uma política institucional que incentive o auto-arquivo das publicações desenvolvidas no âmbito institucional no repositório, serve como mote para uma maior valorização da produção científica do INESC TEC.The progressive transformation of scientific practices, driven by the development of new Information and Communication Technologies (ICT), which made it possible to increase access to information, gradually moving towards an opening of the research cycle. This opening makes it possible to resolve, in the long term, the adversity that has been placed on researchers, which involves the existence of barriers that limit access conditions, whether geographical or financial. Although large commercial publishers predominantly dominate scientific production and subject it to the rules imposed by them, the Open Access movement whose first public declaration, the Budapest Declaration (BOAI), was in 2002, proposes significant changes that benefit the authors and the readers. This Movement has gained importance in Portugal since 2003, with the constitution of the first institutional repository at the national level. Institutional repositories have emerged as a tool for disseminating the scientific production of an institution to open the results of the research, both before publication and the preprint process and postprint, increase the visibility of work done by an investigator and his or her institution. The present study, which underwent an analysis of the copyright policies of INESC TEC most relevant scientific publications, allowed not only to realize that publishers are increasingly adopting policies that make it possible to self-archive publications in institutional repositories, all the work of raising awareness, not only for researchers but also for the institution and the whole society. The production of a set of recommendations, which go through the implementation of an institutional policy that encourages the self-archiving of the publications developed in the institutional scope in the repository, serves as a motto for a greater appreciation of the scientific production of INESC TEC