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From left to right, Ramon Maspons (AQuAS), Alfons Nonell (Mind the Byte), Enric I. Canela (UB), Alexandre Perera (CREB, UPC) and Xavier Testar (BIE-UB).
 16.04.2015

Biodata management and public-private partnership, the main challenges of Big Data in Health

Public-private partnership is a sine qua non condition for the development of the great potential of Big Data in the field of biomedicine. This is one of the main conclusions of the conference SciCloud 2015: Big Data and Health, the 3rd edition of the 'Scientific Cloud Annual Conference', held on Tuesday at the Parc Cientific de Barcelona. The meeting, organized by Mind the Byte, with the collaboration of PCB and Biocat and the support of Bellavista, involved the participation of more than 70 experts from the academic, scientific, healthcare, business and government arena.

 

 

At the opening ceremony, Jordi Quintana, head of Business Development of PCB and Alfons Nonell, CEO of Mind the Byte, highlighted the relevance of Big Data in the development of future medicine –known as the 4Ps of medicine (personalized, predictive, preventive and participatory)– and how it can help us attain a sustainable health care system and more streamlined and efficient pharmacological treatments.

During the first session, two plenary talks were given. In the first talk, Xavier Rafael, senior researcher in the area of Health and Pharma ​​R+D +i of Barcelona Digital (BDigital),  gave an introduction on the concept of Big Data, both from a theoretical and practical point of view stating that “the health field is the second in terms of volume of investments in Big Data”. He also stressed the importance of going “beyond strange fashion and technology wording to assess the real importance of Big Data, the volume growth that Big Data represents, and the attraction of investment that it brings”.  Rafael also described the problems faced by technology, both in terms of calculation and algorithm. He went on to explain in more detail two of the initiatives launched by BDigital in this field: a patient monitoring project to provide clinical management support and assistance in decision making to the treating medical team, and an advanced home telecare program for disease prevention, promotion of healthy habits and physical and social autonomy of older people.

Next, Karma Peiró, data journalism expert, professor of degree and master  courses at the Blanquerna University Communications Department and member of the Open Knowledge Foundation in Spain (OKFN Spain) addressed the importance of visualization to understand the huge amount of data that are currently being managed. To put this into context, she gave several historical and current examples, from computer graphics showing the evolution of the number of soldiers in Napoleon’s army to current tools to help analyze the number of judicial pardons granted by the Spanish government or the amount of money given by pharmaceutical companies to medical offices in the United States.

After the coffee break, a round table, moderated by Xavier Telstar, vice-director of the Institute for Entrepreneurship at the University of Barcelona and vice president of the Spanish Association of Scientific and Technological Entrepreneoous (AFEC), focused on Big Data applications in biomedicine.

Alejandro Perera, professor and researcher at the Biomedical Engineering Research Center (CREB) of the Technical University of Catalonia spoke about the evolution of omics scicence highlighting the importance of placing a stimulus or specific analysis in an environment of adequate knowledge. “Putting things into context can solve the excess data and noise that often accompany the samples”. He also referred to speech recognition systems and Google searches, where the impact of a word gets “inserted” in an environment of knowledge that progressively generates a ‘knowledge network’.

Arcadi Navarro, ICREA professor, director of the Department of Experimental Health Sciences at the University Pompeu Fabra and head of the European Archive of Genome-Phenomenon (EGA), focused his speech on genomics and Big Data. He talked about two major projects: the dbGAP (United States) and EGA (Europe). In terms of access and availability of data, Navarro said that “in America all research results that have used public money are available to the public” but he said that is it necessary to follow strict ethical and privacy protocols to access the information: “We must legislate so that the use of these data, once made public, is not related to discrimination on diseases, ethnic origin, etc”, Navarro pointed out.

Next, Navarro gave several examples highlighting the need to make a correct analysis of the data and the wealth of information that can be extracted. To give an idea of the magnitude of the issue, he made reference to the Human Genome Project (HGP), endowed with 3.000 million dollars and which was developed over 15 years.

Lastly, Ramon Maspons, innovation coordinator of the Catalan Agency for Health Quality and Assessment  (AQuAS), presented VISC+, a project of the Department of Health for the use of anonymized health databases for biomedical research. Maspons talked about the different reasons that hindered changes in the project, mainly with regard to access to data (initially it had emerged as a public-private partnership and now it will only be public), and the possibility that a person can decide to opt-out. He also detailed the various data security and cleansing measures to be applied and, to conclude, contextualized the project in the European setting, stating that it is part of various EU initiatives and that it aims to be one of the centralization nodes of medical data Europe.

The VISC+ project, on debate

After the talks, there was an open discussion that focused on this controversial issue. On one hand, the debate focused around about the political motivations that led to the modification of the first draft, of the opposition of parliamentary groups, and the impossibility of crossing data from VISC+ with other databases (such as epidemiological flu data with weather data). He stressed, however, that the scientific community had been able to convince politicians of the need to carry out a project of this magnitude.

On the other hand, the debate also served to reflect on the rights and duties that come together when it comes to the management of data obtained with public money. The conclusion at this point was unanimous: everything obtained with public funds should be open access, ensuring privacy without the right to waive by citizens. At this point, the discussion focused on Nordic countries and the UK, pioneers in these topics that regard some issues with certain disbelief, such as the opt-out  option raised by the VISC+ project.

Finally, the debated evolved around the project´s problems to access the European Regional Development Fund (ERDF). VISC+ is only addressed to public CERCA centers belonging to the Generalitat and the universities of Catalonia. In addition, no private companies can be involved, which further complicates access to the tools to obtain European funding, which are increasingly eager to stimulate public-private partnership.

The event was closed by Enric I. Canela, vice-rector of Scientific Policy of the University of Barcelona  and director of the Department of Biochemistry and Molecular Biology, Faculty of Biology of the UB, who stressed the role of key companies such as Mind the Byte in exploiting the knowledge generated in universities and research centers.