[{"command":"openDialog","selector":"#drupal-modal","settings":null,"data":"\u003Cdiv id=\u0022republish_modal_form\u0022\u003E\u003Cform class=\u0022modal-form-example-modal-form ecl-form\u0022 data-drupal-selector=\u0022modal-form-example-modal-form\u0022 action=\u0022\/en\/article\/modal\/6793\u0022 method=\u0022post\u0022 id=\u0022modal-form-example-modal-form\u0022 accept-charset=\u0022UTF-8\u0022\u003E\u003Cp\u003EHorizon articles can be republished for free under the Creative Commons Attribution 4.0 International (CC BY 4.0) licence.\u003C\/p\u003E\n \u003Cp\u003EYou must give appropriate credit. We ask you to do this by:\u003Cbr \/\u003E\n 1) Using the original journalist\u0027s byline\u003Cbr \/\u003E\n 2) Linking back to our original story\u003Cbr \/\u003E\n 3) Using the following text in the footer: This article was originally published in \u003Ca href=\u0027#\u0027\u003EHorizon, the EU Research and Innovation magazine\u003C\/a\u003E\u003C\/p\u003E\n \u003Cp\u003ESee our full republication guidelines \u003Ca href=\u0027\/horizon-magazine\/republish-our-stories\u0027\u003Ehere\u003C\/a\u003E\u003C\/p\u003E\n \u003Cp\u003EHTML for this article, including the attribution and page view counter, is below:\u003C\/p\u003E\u003Cdiv class=\u0022js-form-item form-item js-form-type-textarea form-item-body-content js-form-item-body-content ecl-form-group ecl-form-group--text-area form-no-label ecl-u-mv-m\u0022\u003E\n \n\u003Cdiv\u003E\n \u003Ctextarea data-drupal-selector=\u0022edit-body-content\u0022 aria-describedby=\u0022edit-body-content--description\u0022 id=\u0022edit-body-content\u0022 name=\u0022body_content\u0022 rows=\u00225\u0022 cols=\u002260\u0022 class=\u0022form-textarea ecl-text-area\u0022\u003E\u003Ch2\u003EPutting people at the heart of big data\u003C\/h2\u003E\u003Cp\u003EOur smartphone societies are inundated with new services, which sees us donating data in ways we seldom consider, with privacy implications that echo far beyond a light tap on the \u0027Accept\u0027 button. So how do we make sure that the data revolution benefits both individual people and the society we live in?\u003C\/p\u003E\u003Cp\u003EFosca Giannotti, project coordinator of SoBigData, an open ecosystem for \u0027ethic-sensitive scientific discoveries\u0027, sees the need for alternatives that help avoid the concentration of big data in a few hands.\u003C\/p\u003E\u003Cp\u003EBig data, which she defines as \u0027the mass digital traces of human activities, captured as our activities are mediated through IT services\u0027, comes with both risks and benefits.\u003C\/p\u003E\u003Cp\u003E\u0027(People) are fascinated with using new services, thus donating our data to these \u2014 meaning that there are many new opportunities for scientists to study human behaviour,\u0027 explained Giannotti. \u0027On the other side, this data goes to companies, and there is the risk of data being centralised in bigger and bigger silos \u2014 e.g. with Google \u2014 creating imbalance between such owners and individuals.\u0027\u003C\/p\u003E\u003Cp\u003E\u003Cstrong\u003ENovel questions\u003C\/strong\u003E\u003C\/p\u003E\u003Cp\u003EGiannotti, a research director at the Information Science and Technology Institute \u0027Alessandro Faedo\u0027 in Pisa, Italy, says opening up access to big data for analysis by non-specialists can help it be used for social good, for example, in examining topics like medical research, public transport and epidemics.\u003C\/p\u003E\u003Cp\u003E\u0027Many researchers are demonstrating how human mobility data like that from mobile phones can be used to indicate the health of a country. Or, in social debate, we can understand better what happened by analysing social media use during Brexit, looking at fake news or detecting bots,\u0027 said Giannotti.\u003C\/p\u003E\u003Cp\u003E\u0027Our virtual environment will support non-experts in creating such experiments.\u0027\u003C\/p\u003E\u003Cp\u003ESoBigData, which is short for the Social Mining \u0026amp; Big Data Ecosystem, is a safe virtual research environment that allows researchers, economists, decision makers, and innovators to ask novel questions of big data, \u0027to fully unleash the power of big data analytics for all\u0027.\u003C\/p\u003E\u003Cp\u003EThe infrastructure offers access to facilities in the form of huge datasets, libraries of algorithms, and ready-to-use data toolkits provided by 12 European research institutions experienced in big data analytics.\u003C\/p\u003E\u003Cp\u003E\u003Cstrong\u003EPrivacy\u003C\/strong\u003E\u003C\/p\u003E\u003Cp\u003EBut the project\u0027s focus on ethics has another form.\u003C\/p\u003E\u003Cp\u003EIt draws on the expertise of data scientists to help transform research questions into big data analytical processes which are based on\u0026nbsp;the concept of \u0027privacy-by-design\u0027 \u2014 posing the appropriate legal and ethical questions that a data scientist must ask themselves right from the beginning. And it\u2019s coming just in time.\u003C\/p\u003E\u003Cp\u003ELate May will bring about the introduction of the \u003Ca href=\u0022https:\/\/ec.europa.eu\/info\/law\/law-topic\/data-protection_en\u0022 target=\u0022_blank\u0022 rel=\u0022noopener noreferrer\u0022\u003EGeneral Data Protection Regulation\u003C\/a\u003E (GDPR), a new EU law which was created to govern personal data protection in Europe.\u003C\/p\u003E\u003Cp\u003EThe idea of the GDPR is to give people greater control of their data, by allowing them to know what data organisations hold about them and how it is used, as well as making it easy to change permissions.\u003C\/p\u003E\u003Cp\u003EAn area that will be heavily affected by the changes this will bring is the biomedical sector \u2014 one of the reasons why the work of a project called My Health My Data (MHMD) may likely prove very useful.\u003C\/p\u003E\u003Cp\u003EMHMD coordinator Professor Edwin Morley-Fletcher, president of e-health consultancy Lynkeus, says\u0026nbsp;the aim\u0026nbsp;is to design a network that gives people full control of their personal healthcare data.\u003C\/p\u003E\u003Cp\u003EThe project, which is due to finish next year, would complement hospital data systems with an open biomedical information interface allowing hospitals, researchers, and businesses to use de-identified data for open research, at the same time as letting patients manage their personal data account from an electronic device.\u003C\/p\u003E\u003Cp\u003E\u0027With the GDPR coming, whenever you deal with re-identifiable data, the privacy of the data subjects must be strongly guaranteed,\u0027 he said. \u0027Normally, all hospitals have systemised data that can be traced back to the patients, which implies a strong need to have direct consent from the patient, and the capacity to full traceability of it, to know what happens with the data.\u0027\u003C\/p\u003E\u003Cp\u003E\u003Cblockquote class=\u0022tw-text-center tw-text-blue tw-font-bold tw-text-2xl lg:tw-w-1\/2 tw-border-2 tw-border-blue tw-p-12 tw-my-8 lg:tw-m-12 lg:tw--ml-16 tw-float-left\u0022\u003E\n \u003Cspan class=\u0022tw-text-5xl tw-rotate-180\u0022\u003E\u201c\u003C\/span\u003E\n \u003Cp class=\u0022tw-font-serif tw-italic\u0022\u003E\u0026#039;It\u2019s an aspect of empowerment, the democratisation of data in a sense.\u0026#039;\u003C\/p\u003E\n \u003Cfooter\u003E\n \u003Ccite class=\u0022tw-not-italic tw-font-normal tw-text-sm tw-text-black\u0022\u003EEdwin Morley-Fletcher, President, Lynkeus\u003C\/cite\u003E\n \u003C\/footer\u003E\n\u003C\/blockquote\u003E\n\u003C\/p\u003E\u003Cp\u003E\u003Cstrong\u003EBlockchain\u003C\/strong\u003E\u003C\/p\u003E\u003Cp\u003EThis is why MHMD\u0027s project leaders decided to make a distributed, peer-to-peer network based on blockchain, which is essentially a decentralised digital ledger system. It creates a secure management layer for encrypted and anonymised data, opening it up for shared use while ensuring the privacy of the patient.\u003C\/p\u003E\u003Cp\u003EMoreover, the possibility of \u0027smart contracts\u0027 in certain types of blockchain means that patients can set and update the consent conditions controlling how their data are used, with these contracts automatically dictating how the data can be accessed or re-used in any given circumstance.\u003C\/p\u003E\u003Cp\u003E\u0027It\u2019s an aspect of empowerment, the democratisation of data in a sense,\u0027 said Prof. Morley-Fletcher. \u0027The goal is to make it as frictionless as possible, with no bureaucracy, so that hospital data controllers and individuals can make clear decisions on what happens with data.\u0027\u003C\/p\u003E\u003Cp\u003EThe approaches of MHMD and SoBigData align with Europe\u0027s vision of a shared online repository making all data from publicly funded research available for all \u2014 the \u003Ca href=\u0022https:\/\/horizon-magazine.eu\/article\/nine-things-we-now-know-about-european-open-science-cloud_en.html\u0022 target=\u0022_blank\u0022 rel=\u0022noopener noreferrer\u0022\u003EEuropean Open Science Cloud\u003C\/a\u003E.\u003C\/p\u003E\u003Cp\u003ELate 2017\u0027s European Open Science Cloud event in Brussels made it clear that the EU would like to see this science cloud become a reality by 2020, and around \u20ac272 million of the Horizon 2020 budget for 2018-2020 is already earmarked for its implementation.\u003C\/p\u003E\u003Cp\u003E\u003Cem\u003EThe research in this article is funded by the EU. 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