Project Title: The Big O
Project Description: The BigO project allows European citizens to engage in the collection of data that will throw light on obesity in children. It will be facilitated through the development of a platform, allowing the quantification of behavioural community patterns through Big Data provided by wearables and eHealth- devices. During the project, BigO will reach out to more than 25,000 school and age-matched obese children and adolescents as sources for community data. Comprehensive models of the obesity prevalence dependence matrix will be created, allowing, for the first time, for data-driven effectiveness predictions about specific policies on a community and the real-time monitoring of the population response, supported by powerful real-time data visualisations. In short, BigO will provide an innovative new suite, allowing public health authorities to evaluate their communities based on their obesity prevalence risk and to take local action, based on objective evidence. BigO does not aim to redefine, from the ground-up, the existing obesity-related policy strategies targeting childhood obesity prevalence. BigO does, however, aim to redefine the way those strategies are designed and deployed in the European societies.
Project Status: Start date February 2017, ongoing
Childhood and adolescent obesity is a major global and European public health problem. Currently, public actions are detached from local needs, mostly including indiscriminate blanket policies and single-element strategies, limiting their efficacy and effectiveness. The need for community-targeted actions has long been obvious, but the lack of monitoring and evaluation framework and the methodological inability to objectively quantify the local community characteristics, in a reasonable timeframe, has hindered that. Fortunately, technological achievements in mobile and wearable electronics and Big Data infrastructures allow the engagement of European citizens in the data collection process, allowing us to reshape policies at a regional, national and European level.
In preparing for the BigO project, researchers have identified three areas where ethics come into play but where legislation provides limited or no supporting framework.
1. Parental access to data
Data relating to minors is a challenging ethical area. Do parents have a right to access the data collected by the researchers about their children? If so, will that access and knowledge influence their behaviour and that of their children? Moreover, what if the researchers discover something from the children’s data that is unusual or noteworthy? Should parents be informed? Could informing parents alter the research results? Would that be a problem?
Key question: Do parents have a right to continuing access to the data relating to their child?
Key question: Should parents be informed by researchers if child-specific data turns up unusual or notable results?
2. Consent of minors
Initial consent for this project is provided by parents with agreement from the children. If the child does not agree, parental consent is voided. What if any recourse is available to minors who, upon reaching the age of 18, wish to withdraw consent for their data to be used? If the child can withdraw consent, what does that mean for the data already collected?
Key question: What, if any, recourse is available to minors who, upon reaching the age of 18, wish to withdraw consent for their data to be used?
Key question: What happens to the data already used as part of the research if consent is withdrawn?
3. The challenge of data protection in multinational research consortia
Different countries have different data protection rules. How does data protection work when dealing with data across borders. Which rules should apply? What assurances can be given to parents and children about the protection of their data in international research such as this?
Key question: What data protection rules apply to data collected by different members of a multinational research consortia with differing national data protection legislative frameworks?
4. Data Retention
When data is collected for the purpose for a specific research project, for how long should that data be retained? The Health Research Board in Ireland for example recommends that research data be retained for a minimum of 10 years. However, it also recommends that in the case of data relating to public health the retention period be longer to allow for further research and follow up.Researchers are currently unclear about the future of the BigO data once the project is complete. How long should it be retained for? Are there benefits for society if the data is retained?
Key question: How long should research data be retained for after the completion of the project