Epidemiological data accessibility in Brazil
Authors: Flávio Codeço Coelho, Cláudia Torres Codeço, Oswaldo Gonçalves Cruz, Sabrina Camargo, Pierre-Alexandre Bliman
Journal: The Lancet Infectious Diseases (2016)

Concerns about data sharing and transparency during epidemiological emergencies are not new.1Modjarrad K Moorthy VS Millett P Gsell PS Roth C Kieny MP Developing global norms for sharing data and results during public health emergencies.PLoS Med. 2016; 13: e1001935Crossref PubMed Scopus (91) Google Scholar, 2Whitty CJ Mundel T Farrar J Heymann DL Davies SC Walport MJ Providing incentives to share data early in health emergencies: the role of journal editors.Lancet. 2015; 386: 1797-1798Summary Full Text Full Text PDF PubMed Scopus (26) Google Scholar, 3NatureBenefits of sharing.Nature. 2016; 530: 129Crossref Scopus (8) Google Scholar, 4Callaway E Zika-microcephaly paper sparks data-sharing confusion.Nature. 2016; (published online Feb 12.)https://doi.org/10.1038/nature.2016.19367Crossref Google Scholar Dye and colleagues5Dye C Bartolomeos K Moorthy V Kieny MP Data sharing in public health emergencies: a call to researchers.Bull World Health Organ. 2016; 94: 158Crossref PubMed Scopus (49) Google Scholar have announced an initiative called Zika Open through which the manuscripts and respective data submitted to Bulletin of the World Health Organization would be publlished as open access from the date of submission onwards, under a Creative Commons License (CC BY IGO 3.0). This is an important initiative. Here we report challenges faced, particularly in Brazil, for timely, lawful access to governmental collected disease-notification data that are essential to understand the current Zika virus epidemic, and any future public health emergency. Brazil has a country-wide disease notification system, SINAN, that allows for continuous assessment of epidemiological dynamics throughout the country. Created in the 1990s, it continually records cases of many diseases via compulsory notification by health-care facilities all over the country. Case reports come mostly from public health-care facilities, because the private health-care sector does not seem to comply with the required notifications. SINAN is centrally managed and releases annual reports with aggregated data. It also has a web interface where one can tabulate notified cases of diseases per municipality, month, and covariates. This open notification system has fed many hundreds of epidemiological studies and has contributed to the development of a strong Brazilian epidemiological research. However, there are major drawbacks in SINAN,6Galvao PRS Ferreira AT Maciel M et al.An evaluation of the Sinan health information system as used by the Hansen's disease control programme, Pernambuco State, Brazil.Lepr Rev. 2008; 79: 171-182PubMed Google Scholar mainly its slow update cycle and restrictive data-access policies and tools. In the advent of public health emergencies, such as the current Zika virus epidemic, this is not satisfactory. First, there is a delay of months to years for data to be available to researchers. This is due to the logistics, but also the policy of cleaning the data before publishing. However, to be used for real-time epidemiological analysis, data are needed as they appear, even if they are to be corrected and updated later. Secondly, SINAN only provides access to monthly data, which is too coarse a time-scale for disease modelling. In general, many of the challenges regarding the usability of SINAN are related to the use of legacy database management systems and of data entry systems, which provide insufficient tools to prevent data entry errors. SINAN and other public health information systems also suffer from accessibility issues. They were designed for manual query by a human being. Modern mathematical and statistical epidemiology methods can consume large volumes of data and provide unique insight into the early dynamics of transmission,7Coelho FC de Carvalho LM Estimating the attack ratio of dengue epidemics under time-varying force of infection using aggregated notification data.Sci Rep. 2015; 5: 18455Crossref PubMed Scopus (12) Google Scholar, 8Gomes MF Piontti AP Rossi L et al.Assessing the international spreading risk associated with the 2014 west African Ebola outbreak.PloS Curr. 2014; (published online Sept 2.)https://doi.org/10.1371/currents.outbreaks.cd818f63d40e24aef769dda7df9e0da5Crossref PubMed Google Scholar but demand machine readable data (ie, data endpoints that can be automatically queried by analytical software). There is an opportunity for SINAN and other national notification systems to rethink their structure and data access policies. If this is not done, SINAN is risking complete obsolescence. A good example of an application that benefits from better access to readily accessible data are early warning and nowcasting systems for transmissible diseases, such as the InfoDengue, which is now running in Rio de Janeiro. By properly integrating data from different sources, such as climate, social media activity, and disease notification, each with its own level of sensitivity and specificity, InfoDengue acknowledges uncertainties in each of the individual sources and provide alerts and warnings to guide public health action. However, restrictive access policies make it very difficult to run nowcasting systems. The need for specific permissions and human interference to access data imposes limitations to such initiatives. Unfounded concerns about confidentiality and potential ill-effects of data transparency are among the main barriers to data-sharing, but these could be properly managed by well established techniques, such as some level of aggregation. Both the Brazilian and the international academic communities would greatly benefit from a clear stance on the part of the government, favouring open data access, along with the necessary investments required to make it a reality. On our part, InfoDengue is prepared to make our enriched dataset available to all interested under a Creative Commons License, as suggested by Dye and colleagues.5Dye C Bartolomeos K Moorthy V Kieny MP Data sharing in public health emergencies: a call to researchers.Bull World Health Organ. 2016; 94: 158Crossref PubMed Scopus (49) Google Scholar However, the regulatory foundations for such a service are still not clear. We hope that the current Zika virus epidemic can serve as wake-up call to change these outdated policies. Once we start to see the positive effect of better data accessibility on the response to epidemiological emergencies, perhaps the private health sector will begin to see the importance of better compliance with notification requirements. We declare no competing interests.