Optimising cohort data in Europe

breaches and this vulnerability is increased in the context of commercial downloadable applications. Namely, people are willing to give highly personal information in order to benefit from application devices (e.g. they opt for the ''I accept' option without reading the terms of use) (Fiesler and Proferes, 2019). 3.3. Consent In terms of consent, mobile data collection does not solve the tension between informed consent on the one hand and the duty to participate on the other. Namely, there are calls to include as much diverse data as possible during mobile data collection for the ''greater good'' (Olteanu et al., 2019). This inclusivity however, is conductive to numerous methodological, legal and ethical problems. First, the combination of an important volume of data from different sources create highly intrusive data sets (Martinez Martin et al., 2018). In the present context, highly intrusive data sets collect identifiable information about participants without their informed consent. With regards to the increasing capacities of data combination technologies, this implies serious security and privacy breaches especially when other kinds of identifiable data are involved (Crawford and Schultz, 2014). Fair and ethically grounded consent is a key issue of data collection through social media . The core concern is the ways in which participants may be informed before they give their consent. Whether a page on Facebook and Twitter whose very vocation is to receive as much “likes” as possible could be considered as private data is open to debate (Taylor and Pagliari, 2018). A more central point is that not all participants may have the required level of social media literacy in order to understand how their data should be used. For a younger population, social media may be a tool of self-expression, social standing and perceived worth (Fiesler and Proferes, 2018). Social media is a place where young participants usually seek information and feedback from their peers. Consent in such conditions can be obtained only after a sustained dialogue with the participants about which kind of data they would be willing to give (Hunter et al., 2018; Copes et al., 2019). This is not an easy task because teenage participants do not necessarily want to disclose their personal health information on social media (Olteanu et al., 2019). For the elderly population, the issues of consent through social media is also focused on potential levels of social media literacy. Namely, many of the elderly participants are not fluent in social media usage, which prompts the need for social media education programmes (Copes et al., 2018). Moreover, elderly patients operate in an environment that is socially, ethically and practically complex. For instance, cognitive disabilities in conjunction with issues of social isolation and physical vulnerability may make it quite difficult to determine whether the patients clearly understand what they are consenting to (Martinez-Martin and Kreitmair, 2018). While this problem is particularly acute for the elderly population, it should be noted that it is exacerbated through particular