MyHealthMyData (MHMD): Deliverable 7.4 - Study report
Creators: name: Durst, Ludovica
name: Zaccagnini, Davide
Publisher: name: Zenodo
Year: 2020
Subjects: study
report

description: This deliverable describes activities in WP7 and their results primarily around the goal of assessing public perceptions and attitudes towards privacy and data security, in contrast with actual behaviour as observed in the use of the MHMD platform. The WP was built on a logic of consequential steps, starting from the conceptual model of key societal issues addressed by MHMD, stemming from the study design and preliminary analysis conducted in D7.1, in which the issues of <em>trust, privacy, ethics</em><em> and control over data</em> as understood and lived in day to day life were historically, culturally and sociologically framed. The goal in the line of work was <em>“to assess public perceptions, attitudes and sensibilities of different subjects towards privacy and data security in health, taking particularly into account the ethical and sociological implications related to the use of advanced technological tools and infrastructures”</em>. To this end, an extensive literature review was carried out and operational definitions of those four themes were instantiated along with their interrelationships and the methods to practically assess and wherever possible quantify them in European populations. This analysis was also framed in the context of the GDPR and its emphasis on these aspects. On this basis and taking into account the individual user requirements described in D1.1, a questionnaire was designed to quantify the prevalence of certain attitudes and to support an evidence-based study of users’ behaviours, stated values and preferences, as detailed in D7.2. In the meanwhile, the opportunity to conduct an additional study arose in the context of the Wannacry Ransomware attack in the summer of 2017, which severely impacted a number of EU hospitals, including our project partner QMUL. Given the stringent relevance of this event to the themes and objectives of the MHMD project, an additional line of research was initiated to specifically investigate public responses to such a major privacy and data security event using sentiment analysis techniques on both traditional and social media. The sentiment analysis work was included in D7.2 highlighting few relevant trends, among which that the expected decrease in trust among the UK citizenship toward institutions’ ability to protect personal data was not as sharp as predictable. After an initial drop, expressed through widely shared disparaging or alarmed tweets in relation to the event, the NHS response mediated by public media managed to restore levels of trust that were just below neutral on the sentiment scale. The trend also reached a steady plateau soon after with an overall, only slight deflection despite the pervasive vulnerabilities of UK healthcare institutions were extensively reported, suggesting a pre-existing disillusionment in the citizenship on the reliability and trustworthiness of medical IT systems and at the same time only marginal interest in the fate of own’s personal data. As detailed in D7.3, a user enrolment strategy to disseminate the questionnaire, embedded in the MHMD app, was implemented. Individual users were invited to download MHMD app through a dedicated marketing campaign involving health apps providers Digi.me and Medicus, to then perform data mining on their selected preferences comparing users’ actual behaviours with preferences and opinions from the questionnaire. The results of this analysis are the subject of this deliverable.