Could Hunger for (Personal) Data Bring Benefits to Society?

As the terms “hunger” and “benefits” in most cases exclude each other and, expectations of all interested parties are high on both ends, we spent hours listening carefully to our lecturers and panelist, to summarise ideas and solutions to a complex question from the headline.

In this article, JPM partner Ivan Milosevic gives a comprehensive insight into Part 1 of the JPM International DT Conference, held in November, with valuable solutions that result from different approaches and expectations of different stakeholders – citizens, scientists, project, digitalisation and technology leaders, regulators and commerce.

Is Serbia, as a regional digitalisation leader, capable of aligning the hunger for (personal) data, dignity and well-being of its citizens? It is a difficult ‘exam’ to pass.

As it was the case throughout the past, hunger has always represented the primary condition for any kind of innovation. It may be referred to by many different names, such as the birth of an idea, the desire for improvement, or the intention to contribute to the community, but in its essence, it is hunger. Although in the literal and etymological sense, hunger and benefits are mutually exclusive terms, in the specific case, the global community has waited for this type of ‘’starvation’’ to appear, as it is a condicio sine qua non when it comes to improving all those aspects that we had the opportunity to hear about at the conference.

The main idea of the policy makers is to collect, i.e. to transfer genetic and biomedical data from the state institutions carrying out genome sequencing and processing biomedical data and store them on online platform managed by the Office for Technological Development and E-Government – forming genetic and biomedical repository, with the aim:

  • to connect collected data with patients’ health electronic records to be used by HCPs;
  • to (pseudo) anonymise personal data and to enable access to data, data sharing and manipulation by researchers and commerce.

Biomedical data which are to be collected are: patient therapy and realised prescriptions data, patient laboratory analysis/report data, medical documentation related to the patient, radiology reports. The following benefits are expected: development of precision medicine and better patient treatment, early diagnostics, improved registries of diseases, increase of NGS capacities, development of genetic data standards, integration of various electronic healthcare systems, increase of the number of clinical studies conducted in Serbia, etc.

Yet, the regulatory framework to implement the above stated objectives is still unknown and vague.

Here are the issues, ideas and solutions identified at the conference link (Serbian only).

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