Health data activism

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.Os pacientes precisam de ser sensibilizados para o direito de acederem aos seus próprios dados de saúde, pois trata-se de algo que lhes pertence. O papel das associações é fundamental na transmissão desta informação aos doentes. Assim, o ativismo dos dados de saúde vem promover a segurança dos utilizadores, mostrando-lhes este mesmo direito, na formação deste novo conceito. Assim, o foco da tese é a promoção dos dados de saúde e a criação de um modelo (ambicioso) de como as associações de doentes podem inovar e promover os direitos associados à utilização e acesso aos dados de saúde (ativismo de dados de saúde). Nesta investigação, a metodologia a seguir será a de questionários e entrevistas às Organizações/Associações, sendo que se pode definir como uma análise de conteúdo temática. Desta forma, podemos classificar que neste projeto teremos uma análise tanto qualitativa como quantitativa, mas sobretudo qualitativa. Os dados do estudo foram recolhidos utilizando métodos qualitativos, tais como questionários e entrevistas. O processo de análise de dados do estudo envolveu uma análise estatística descritiva para os questionários, enquanto a análise aprofundada do conteúdo foi feita para as entrevistas. Os resultados obtidos foram recolhidos através das 229 associações contactadas, 27 responderam ao questionário, em que 13 delas aceitaram fazer uma entrevista. Depois de se recolher todos os contributos dos resultados, pode-se definir o conceito "Ativismo de Dados de Saúde" como um movimento que capta uma ação e os esforços de uma pessoa ou uma organização/associação podem ser levados na promoção dos direitos de acesso e melhor utilização dos dados de saúde, como utilizá-los e o valor que pode ser extraído dos seus dados de saúde. Identificar quem são os atores chave no sistema de saúde que se relacionam com os dados de saúde (por exemplo, agência de saúde digital, agências de investigação, etc.) para os envolver nas prioridades do ativismo dos dados de saúde: fácil acesso aos dados de saúde e que a exploração do valor dos dados seja promovida e o valor gerado seja devolvido aos pacientes

Alcuni abstract di articoli che trattano argomenti relativi all'eHealth

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The cyberpolitical space of the European Union: an overview of e-Government, e-Democracy and interoperability in the European space and its citizenship

e-Government and e-Democracy, in the latest decades, with the recent fast-paced developments of information and communication technologies, have been regarded as new mechanisms to enrich the democratic culture and link institutions to its citizens. The European Union is a peculiar case with its own idiosyncratic form of citizenship. In this paper, we analyse the progresses of e-Democracy in the European Union and its developments through interoperability projects, as well as its challenges with the uprising, in the latest years, of many problems that came from the use of these technologies. We argue that a promotion of the European citizenship is necessary in the development of a European Union cyberspace

Building a Socio-technical Perspective of Community Resilience with a Semiotic Approach

Situated in the diversity and adversity of real-life contexts facing crisis situations, this research aims at boosting the resilience process within communities supported by digital and social technology. In this paper, eight community leaders in different parts of the world are invited to express their issues and wishes regarding the support of technology to face social challenges. Methods and artefacts based on the Organisational Semiotics (OS) and the Socially-Aware computing have been applied to analyse and consolidate this data. By providing both a systemic view of the problem and also leading to the identification of requirements, the analysis evidences some benefits of the OS-based approach to consolidate perspectives from different real-life scenarios towards building a socio-technical solution

Portugal: Leapfrogging Digital Transformation

This report is structured as follow: Section 1 presents details about Portugal enabling or inhibiting its digital transformation. Section 2 analyzes the main motivations for the digital transformation strategy; Section 3 summarizes its main challenges, while Section 4 presents the main components of the strategy. Section 5 analyzes the governance model, and Section 6, the legal and regulatory framework. Section 7 discusses critical enablers for the digital transformation of government services. Section 8 introduces 16 key initiatives of the strategy. Section 9 summarizes the lessons learnt, followed by an assessment of the strategy’s impact in Section 10. Section 11 synthesizes lessons for Latin American countries. Finally, Appendix A enumerates main legal and regulatory instruments supporting the digital transformation in Portugal, Appendix B presents a set of 18 sections providing details of the initiatives analyzed in the report1, and Appendix C explains how the digital transformation efforts contributed to face the challenges raised by the COVID-19 pandemics.Fil: Estevez, Elsa Clara. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Universidad Nacional de La Plata; ArgentinaFil: Fillottrani, Pablo. Provincia de Buenos Aires. Gobernación. Comisión de Investigaciones Científicas; Argentina. Universidad Nacional del Sur; ArgentinaFil: Linares, Sebastián. Consejo Nacional de Investigaciones Científicas y Técnicas. Centro Científico Tecnológico Conicet - Bahía Blanca. Instituto de Investigaciones Económicas y Sociales del Sur. Universidad Nacional del Sur. Departamento de Economía. Instituto de Investigaciones Económicas y Sociales del Sur; ArgentinaFil: Cledou, Maria Guillermina. Universidade do Minho; Portuga

An innovative approach for health care delivery to obese patients: from health needs identification to service integration

In Europe, more than half of the population is overweight or obese, and effort to design, validate, and implement innovative approaches is required to address social and health unmet needs of obese patients in terms of health promotion, disease prevention, and integration of services. The challenge is improving the collaboration between the different health and care stakeholders involved in the lives of obese patients, changing the socio-cultural attitude towards food intake and other behaviours leading to a negative impact on their health-related quality of life. The digital transformation of health and care can support changes in healthcare systems, healthy policy, and approaches to patient care and better implementation of the different health promotion and disease prevention strategies between all the stakeholders and support obese patients. Based on the previously experience adopted by Blueprint Partners with the Blueprint persona and user scenario in the context of models of care and prevention, health policies and analysis of risk factors affecting health and quality of life of obese subjects, the study aimed to simulate an integrated care pathway, through a multidisciplinary approach, developing and applying solutions and good clinical practices addressing the social and health unmet needs of obese patients. A pilot study assessed the quality of life (QoL), adherence to the Mediterranean diet, efficacy and interoperability of a digital health platform, Paginemediche. it. A qualitative approach has been adopted to identify and specify key digital solutions and high-impact user scenarios in Active and Healthy Ageing (AHA). To achieve a successful result, an iterative and collaborative approach has been followed to develop a user-centred perspective to the identification of solutions addressing health needs with different complexity along the entire life-course. Four initial key topic areas were chosen and used to identify different digital solutions that may meet the needs of the population segments defined by both age and the complexity of their health status. All data, derived from the industry representatives in the European Innovation Partnership on Active and Healthy Ageing (EIP on AHA), were collected via a survey to how digital solutions best met the needs of the various population segments represented by personas. Subsequently, innovative solutions were designed based on how a user from a target group interacts with technologies, developing "personas" belonging to specific "population segments" with different conditions and needs. Then, a high-impact user scenario, based on the correlation of personas' needs, good clinical practices and digital solutions available targeting needs which playing a role in the health and care delivery for the persona, has been developed. In the end, to evaluate how digital solutions and technologies can support obese patients during their weight loss or management of their related comorbidities in current service provision, ten obese patients were enrolled to evaluate a Digital Health platform, pagininemediche.it, developed. Matilde, the Blueprint persona developed, highlighted some of the main needs (social support, development of a health-friendly environment and educational program on healthy nutrition and physical activity) that may be addressed by integrating innovative solutions in the care of obese patients. Based on her profile, a high-impact user scenario diagram correlates health and social needs with digital solutions and can help key actors in the creation of a well-integrated care approach. Moreover, the evaluation of the digital platform, paginemediche.it, demonstrated how digital solutions can motivate and support obese patients in changing habits towards a healthy lifestyle, although no further statistical significance has been identified in the quality of life assessment because of the limited number of the patients, and short period of observation. Overweight or obese patients tend to be marginalized and the subject of a real social stigma. Digital solutions may be useful to overcome psychological factors that prevent obese patients from starting their journey for a lifestyle change. The suggested approach, which considers health needs, IT skills, socioeconomic context, interoperability, and integration gaps that may influence the adoption of innovative solutions tailored to improve health outcomes is person-centred, and identify what is important for obese patients. The implementation of a persona and user scenario approach may also be useful for the early involvement of end-users in solutions' design and adaptation, increasing adherence, and the effectiveness of digital solutions. Persona profiles, the user scenario, and the related digital solution also consider the potential benefits that can derive for both patients and health system in term of reduced emergency room admissions, waiting lists, and health related expenditures

A feasibility study for the provision of electronic healthcare tools and services in areas of Greece, Cyprus and Italy

Background: Through this paper, we present the initial steps for the creation of an integrated platform for the provision of a series of eHealth tools and services to both citizens and travelers in isolated areas of thesoutheast Mediterranean, and on board ships travelling across it. The platform was created through an INTERREG IIIB ARCHIMED project called INTERMED. Methods: The support of primary healthcare, home care and the continuous education of physicians are the three major issues that the proposed platform is trying to facilitate. The proposed system is based on state-of-the-art telemedicine systems and is able to provide the following healthcare services: i) Telecollaboration and teleconsultation services between remotely located healthcare providers, ii) telemedicine services in emergencies, iii) home telecare services for "at risk" citizens such as the elderly and patients with chronic diseases, and iv) eLearning services for the continuous training through seminars of both healthcare personnel (physicians, nurses etc) and persons supporting "at risk" citizens. These systems support data transmission over simple phone lines, internet connections, integrated services digital network/digital subscriber lines, satellite links, mobile networks (GPRS/3G), and wireless local area networks. The data corresponds, among others, to voice, vital biosignals, still medical images, video, and data used by eLearning applications. The proposed platform comprises several systems, each supporting different services. These were integrated using a common data storage and exchange scheme in order to achieve system interoperability in terms of software, language and national characteristics. Results: The platform has been installed and evaluated in different rural and urban sites in Greece, Cyprus and Italy. The evaluation was mainly related to technical issues and user satisfaction. The selected sites are, among others, rural health centers, ambulances, homes of "at-risk" citizens, and a ferry. Conclusions: The results proved the functionality and utilization of the platform in various rural places in Greece, Cyprus and Italy. However, further actions are needed to enable the local healthcare systems and the different population groups to be familiarized with, and use in their everyday lives, mature technological solutions for the provision of healthcare services

Research data management challenges in citizen science projects and recommendations for library support services. A scoping review and case study.

Citizen science (CS) projects are part of a new era of data aggregation and harmonisation that facilitates interconnections between different datasets. Increasing the value and reuse of CS data has received growing attention with the appearance of the FAIR principles and systematic research data management (RDM) practises, which are often promoted by university libraries. However, RDM initiatives in CS appear diversified and if CS have special needs in terms of RDM is unclear. Therefore, the aim of this article is firstly to identify RDM challenges for CS projects and secondly, to discuss how university libraries may support any such challenges. A scoping review and a case study of Danish CS projects were performed to identify RDM challenges. 48 articles were selected for data extraction. Four academic project leaders were interviewed about RDM practices in their CS projects. Challenges and recommendations identified in the review and case study are often not specific for CS. However, finding CS data, engaging specific populations, attributing volunteers and handling sensitive data including health data are some of the challenges requiring special attention by CS project managers. Scientific requirements or national practices do not always encompass the nature of CS projects. Based on the identified challenges, it is recommended that university libraries focus their services on 1) identifying legal and ethical issues that the project managers should be aware of in their projects, 2) elaborating these issues in a Terms of Participation that also specifies data handling and sharing to the citizen scientist, and 3) motivating the project manager to good data handling practises. Adhering to the FAIR principles and good RDM practices in CS projects will continuously secure contextualisation and data quality. High data quality increases the value and reuse of the data and, therefore, the empowerment of the citizen scientists