Patients' Perception of Privacy of Personal Data, Shared in Online Communities: Are We in the Presence of a Paradox?

Virtual online communities help people in coping with complex health issues, such as those present in patients suffering chronic diseases. Further research is required in order to clarify the impact of sharing of personal experiences on the perception of privacy and confidentiality by patients. We studied the case of Carenity an online social network created in France in 2011 bringing together 300,000 patients across Europe, and selected patients suffering Multiple Sclerosis. We conducted an exploratory-descriptive survey, and 253 patients completed an online questionnaire. Most participants did not consider that their privacy was threatened when sharing their personal experiences and data associated with their health condition. As common sense prevents one to share information to strangers to ensure privacy, such paradox may be explained by new strategies to face challenges imposed by chronic conditions disease, where sharing personal experiences may be considered as a complementary source of social support by patients.

The Meaning of Patient Empowerment in the Digital Age: The Role of Online Patient-Communities.

Traditionally, patient empowerment has been used as a strategy for health promotion. The rise of online communities of patients represents a good example of how patient empowerment occurs, independently of the intervention of existing healthcare providers and insurers, allowing thus a more accurate definition of meaning of this concept. We describe two situations related with the development of health-related social networks: (1) The emergence of a new biomedical research model in which patients lead research, shifting the equilibrium of power from the professionals to research subjects themselves, and (2) The emergence of Lay Crowd-Sourced Expertise in these communities, arising from the daily exchange among patients affected by chronic conditions and their relatives, giving place to a new era of bottom-up data generation, previously unknown in biomedical sciences. We enrich these descriptions by analyzing interviews to key actors of these "on line" communities": Michael Chekroun, founder of "Carenity, France", and Paul Wicks Vice President at "PatientsLikeMe, USA".

A comparative analysis of biomedical research ethics regulation systems in Europe and Latin America with regard to the protection of human subjects.

The European project European and Latin American Systems of Ethics Regulation of Biomedical Research Project (EULABOR) has carried out the first comparative analysis of ethics regulation systems for biomedical research in seven countries in Europe and Latin America, evaluating their roles in the protection of human subjects. We developed a conceptual and methodological framework defining 'ethics regulation system for biomedical research' as a set of actors, institutions, codes and laws involved in overseeing the ethics of biomedical research on humans. This framework allowed us to develop comprehensive national reports by conducting semi-structured interviews to key informants. These reports were summarised and analysed in a comparative analysis. The study showed that the regulatory framework for clinical research in these countries differ in scope. It showed that despite the different political contexts, actors involved and motivations for creating the regulation, in most of the studied countries it was the government who took the lead in setting up the system. The study also showed that Europe and Latin America are similar regarding national bodies and research ethics committees, but the Brazilian system has strong and noteworthy specificities.

Spatial econometric model of natural disaster impacts on human migration in vulnerable regions of Mexico.

Mexico's vast human and environmental diversity offers an initial framework for comprehending some of the prevailing great disparities between rich and poor. Its socio-economic constructed vulnerability to climatic events serves to expand this understanding. Based on a spatial econometric model, this paper tests the contribution of natural disasters to stimulating the emigration process in vulnerable regions of Mexico. Besides coping and adaptive capacity, it assesses the effects of economic losses due to disasters as well as the adverse production and trade conditions of the 1990s on emigration rates in 2000 at the municipality level. Weather-related disasters were responsible for approximately 80 per cent of economic losses in Mexico between 1980 and 2005, mostly in the agricultural sector, which continues to dominate many parts of the country. It is dramatic that this sector generates around only four per cent of gross domestic product but provides a livelihood to about one-quarter of the national population. It is no wonder, therefore, that most emigration from this country arises in vulnerable rural areas.