FAIR4Health: Findable, Accessible, Interoperable and Reusable data to foster Health Research.

Due to the nature of health data, its sharing and reuse for research are limited by ethical, legal and technical barriers. The FAIR4Health project facilitated and promoted the application of FAIR principles in health research data, derived from the publicly funded health research initiatives to make them Findable, Accessible, Interoperable, and Reusable (FAIR). To confirm the feasibility of the FAIR4Health solution, we performed two pathfinder case studies to carry out federated machine learning algorithms on FAIRified datasets from five health research organizations. The case studies demonstrated the potential impact of the developed FAIR4Health solution on health outcomes and social care research. Finally, we promoted the FAIRified data to share and reuse in the European Union Health Research community, defining an effective EU-wide strategy for the use of FAIR principles in health research and preparing the ground for a roadmap for health research institutions. This scientific report presents a general overview of the FAIR4Health solution: from the FAIRification workflow design to translate raw data/metadata to FAIR data/metadata in the health research domain to the FAIR4Health demonstrators' performance.

From Raw Data to FAIR Data: The FAIRification Workflow for Health Research.

BACKGROUND: FAIR (findability, accessibility, interoperability, and reusability) guiding principles seek the reuse of data and other digital research input, output, and objects (algorithms, tools, and workflows that led to that data) making them findable, accessible, interoperable, and reusable. GO FAIR - a bottom-up, stakeholder driven and self-governed initiative - defined a seven-step FAIRification process focusing on data, but also indicating the required work for metadata. This FAIRification process aims at addressing the translation of raw datasets into FAIR datasets in a general way, without considering specific requirements and challenges that may arise when dealing with some particular types of data. OBJECTIVES: This scientific contribution addresses the architecture design of an open technological solution built upon the FAIRification process proposed by "GO FAIR" which addresses the identified gaps that such process has when dealing with health datasets. METHODS: A common FAIRification workflow was developed by applying restrictions on existing steps and introducing new steps for specific requirements of health data. These requirements have been elicited after analyzing the FAIRification workflow from different perspectives: technical barriers, ethical implications, and legal framework. This analysis identified gaps when applying the FAIRification process proposed by GO FAIR to health research data management in terms of data curation, validation, deidentification, versioning, and indexing. RESULTS: A technological architecture based on the use of Health Level Seven International (HL7) FHIR (fast health care interoperability resources) resources is proposed to support the revised FAIRification workflow. DISCUSSION: Research funding agencies all over the world increasingly demand the application of the FAIR guiding principles to health research output. Existing tools do not fully address the identified needs for health data management. Therefore, researchers may benefit in the coming years from a common framework that supports the proposed FAIRification workflow applied to health datasets. CONCLUSION: Routine health care datasets or data resulting from health research can be FAIRified, shared and reused within the health research community following the proposed FAIRification workflow and implementing technical architecture.

Availability of information in Public Health on the Internet: An analysis of national health authorities in the Spanish-speaking Latin American and Caribbean countries.

INTRODUCTION: Access to reliable and quality health information and appropriate medical advice can contribute to a dramatic reduction in the mortality figures of countries. The governments of the Americas are faced with the opportunity to continue working on this challenge, and their institutional presence on their websites should play a key role in this task. In a setting where the access to information is essential to both health professionals and citizens, it is relevant to analyze the role of national health authorities. Given that search engines play such a key role in the access to health information, it is important to specifically know - in connection to national health authorities - whether health information offered is easily available to the population, and whether this information is well-ranked in search engines. METHODS: Quantitative methods were used to gather data on the institutional presence of national health authorities on the web. An exploratory and descriptive research served to analyze and interpret data and information obtained quantitatively from different perspectives, including an analysis by country, and also by leading causes of death. A total of 18 web pages were analyzed. Information on leading causes of death was searched on websites of national health authorities in the week of August 10-14, 2015. RESULTS: The probability of finding information of national health authorities on the 10 leading causes of death in a country, among the top 10 results on Google, is 6.66%. Additionally, ten out the 18 countries under study (55%) do not have information ranked among the top results in Google when searching for the selected terms. Additionally, a total of 33 websites represent the sources of information with the highest visibility for all the search strategies in each country on Google for the ten leading causes of death in a country. Two websites, the National Library of Medicine and Wikipedia, occur as a result with visibility in the total of eighteen countries of the sample. CONCLUSIONS: Taking into consideration that providing reliable and quality information on these topics to the population should be one of the priorities of national health authorities, these results suggest that national health authorities need to take measures to try to better position their contents.

Social media in public health: an analysis of national health authorities and leading causes of death in Spanish-speaking Latin American and Caribbean countries.

BACKGROUND: Information and communications technologies, like social media, have the potential to reduce some barriers in disease prevention and control in the Americas. National health authorities can use these technologies to provide access to reliable and quality health information. A study was conducted to analyze availability of information about the leading causes of death on social media channels of national health authorities in 18 Spanish-speaking Latin American and Caribbean countries. METHODS: We gathered data of national health authorities's institutional presence in social media. Exploratory-descriptive research was useful for analysis and interpretation of the data collected. An analysis was carried out for 6 months, from April 1 to September 30, 2015. RESULTS: Sixteen of the 18 countries studied have institutional presences on social media. National health authorities have a presence in an average of almost three platforms (2.8%). An average of 1% of the populations with Internet access across the 18 countries in this study follows national health authorities on social media (approximately, an average of 0.3% of the total population of the countries under study). On average, information on 3.2 of the 10 leading causes of death was posted on the national health authorities' Facebook pages, and information on 2.9 of the 10 leading causes of death was posted on their Twitter profiles. Additionally, regarding public health expenditures and the possibility of retrieving information on the leading causes of death, an apparent negative correlation exists in the case of Facebook, r(13) = -.54, P = .03 and a weak negative correlation in the case of Twitter, r(14) = -.26, P = .31, for the countries with presences in those networks. CONCLUSIONS: National health authorities can improve their role in participating in conversations on social media regarding the leading causes of death affecting their countries. Taking into account Internet accessibility levels in the countries under study and the high rates of people using social networks in even the poorest countries, further research is needed to provide evidence that more dedication to health promotion interventions through social media could significantly improve the impact and reach of public health messages and initiatives.