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We know that the subject of health data is sensitive. This is why our subject here does not concern personal health data but sales data pertaining to the field of health. Open data has known a real craze for several years on the part of public authorities. More recently, it is the private actors, with the concrete example ofIQVIA, which are driving this movement with a view to offering keys to understanding institutional issues. The health crisis has had the effect of accelerating this process.
Aggregate data to disseminate it to as many people as possible
Open data allows whoever collects the data to share it with as many people as possible. In this logic, private players have chosen to use open data as a tool for sharing and exchanging with the general public. Indeed, several reflections led them to initiate an open data approach. The concrete example of Christian Frisch, Data and IA Director at IQVIA demonstrates this: “If we share data with public institutions and administrations why wouldn’t we do it with citizens?”
“When the antigenic tests were launched in pharmacies, chaos reigned – we even went so far as to talk about congestion. The tools at the service of open data have nevertheless made it possible to regulate flows thanks to their ability to obtain, in real time, information on inventory management and peaks in demand and thus to warn healthcare organizations and manufacturers. instantly. The challenge of open data is there: instantaneity! ” added Christian Frisch.
The government can take up to several weeks to retrieve information on drugs from pharmacies – because it will have to go through the CNAM (National Health Insurance Fund) but will only have access to drugs benefiting from reimbursement. . Conversely, specialized private players, and IQVIA perfectly illustrates this point, have direct access to sales data and can share this information. The winning duo: public – private seems more than relevant.
The use of open data in the health sector today makes perfect sense because it allows each level of the administration to have access to thousands of data without waiting for national communications. There is the desire to facilitate access to data for doctors, pharmacists and for any health authority.
Obviously, private companies take care to share only useful information, so-called “living” data that can be analyzed and shared in accessible and interactive formats.
For Christian Frisch in particular, the challenge lies in this ability to offer data that can be easily analyzed and reused for each level. At IQVIA, anonymized data essentially makes it possible to draw up trends on the behavior of individuals in their relationship to drugs in order to guide healthcare professionals, for example. Or they can make it possible to aggregate a certain number of data providing additional information on therapeutic wanderings.
The specific case of the health crisis
A problem encountered by the government since the start of this crisis: collecting, consolidating and analyzing data from various sources. Health data is scattered: emergencies, hospital data, doctors’ prescriptions, pharmacies, etc. Each organization has its own information system, which makes the task more difficult. Not to mention the fact that this data must be constantly updated in an emergency context. Thus, aggregating all this data is a major challenge in order to precisely follow and understand the dynamics of the epidemic. While all of this data is essential for government and health authorities, it is nonetheless important for the general public. Indeed, citizens also want to have access to information for the sake of transparency.
For example, during the launch of the open data portal of IQVIA, the community of “statisticians – citizens” of Twitter showed a real interest in the system and even contributed to making the portal more qualitative by reporting back to us in real time. possible “bugs”. In this kind of situation, it is ultimately the data sender himself who is the first beneficiary of open data sharing!
Local initiatives launched during this period are also a good way to promote them. Here, we will take the example of communities that have made available their data on the number of cases in their region – but also the number of beds still available – pharmacies on duty …
Anonymize to avoid abuses
The transition from health data to open data has raised fears about possible abuses in the protection of the privacy of individuals. On this point, anonymization, which consists of making it impossible, through various techniques, to identify the person concerned, provides a guarantee. In addition, at the regulatory level, the GDPR strictly prohibits the use of sensitive and personal data, of which health data is obviously part.
Today, the health sector remains a sector where open data is less present. The Health Data Hub is a project whose outlines are not well understood at the moment. One thing is certain, we all have a lot to gain by promoting the actions of public – private partnerships in this area. The health sector must therefore quickly modernize and accelerate the march towards open data. The legislator for its part must take its responsibilities and quickly supervise the opening of health data so that it is done in strict compliance with the protection of personal data.
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