The data accumulated by the French health system are representative of care usage in a developed country and can be further valorized. With the launch of the Health Data Hub, a platform for sharing French health data, the government aims to facilitate and encourage their use. Alcimed deciphers the promise of opportunities that this new player in the health ecosystem offers to the pharmaceutical industry.
Since 2016, the National Health Data System (SNDS) brings together the main public health databases: the SNIIRAM for Health Insurance data, the PMSI for the hospital environment and the CépiDc for medical causes of death. However, the procedures for accessing the SNDS are cumbersome, the data are difficult to handle, and little clinical data (diagnoses, test reports, etc.) is available. Thus, with the boom in data analysis technologies, the Villani report on AI, “Making sense of Artificial Intelligence”, published in March 2018, called for the creation of a platform to facilitate the exploitation of health data in France, with the aim of generating value and fostering innovation in health.
The Health Data Hub: a new key player in the health ecosystem
In this context, the Health Data Hub (HDH) acts as a one-stop shop for access to and integration of French health data. Its ambition goes beyond the databases already accessible before, since the HDH intends to extend its databases to clinical and medico-administrative data. In addition, it acts as a catalyst in the exploitation of data. As such, it offers support to the actors of the health ecosystem in the exploitation of health data, through two types of partnerships, accessible to both public and private organizations.
– For data managers (e.g. hospital health data warehouses, or manufacturers of connected objects for medical purposes), the Health Data Hub offers secure storage of anonymized copies of data connected to NSDS databases. Thus, by invoicing users later for the provision of data, the HDH will enable those responsible for health data to add value to them by paying a share.
– Data users (such as research laboratories, health industrialists and digital actors) can, after a validation process of the access request involving, depending on the requests, the Ethics and Scientific Committee for Research, Studies and Evaluations in the field of Health (CESREES) and the National Commission for Information Technology and Liberties (CNIL), access a secure workspace, prepared by the Health Data Hub according to a problem defined upstream. This space includes the agreed upon data and the necessary computing power. The HDH can also provide technical support in the analysis and integration of data and proposes thematic calls for projects that may include financial support from the BPI.
Numerous opportunities for healthcare manufacturers
The arrival of the Health Data Hub opens up an unprecedented field of opportunities for any player in health innovation, and in particular for pharmaceutical and medical device manufacturers. Indeed, the facilitated and integrated exploitation of health data theoretically offers prospects of interest at every stage of the drug or medical device value chain, from fundamental research to development, up to monitoring the use of health products in real life and the organization of care pathways. By way of example, the projects already launched to date deal with:
– The evaluation and improvement of care pathways after a myocardial infarction in Ile-de-France, by combining the e-Must registry, which records the event, and SNDS data.
– Prediction of heart attacks for pacemaker patients by cross-referencing device data from more than 8,000 patients with SNDS data to automatically label episodes of interest.
– Measuring the long-term impact of exposure to immunosuppressive drugs on kidney transplant patients, using the Cristal databases of the Biomedicine Agency and the ABIS database of the Limoges University Hospital.
– Quantification of the proportion of patients affected by an adverse reaction, using the national pharmacovigilance database, the SNDS and the product characteristics in the healthcare regulatory affairs database.
First of all, the health industry will be able to make greater use of this type of project in their activities. The implementation of projects aimed at exploiting health data, Health Insurance, PMSI, can be simplified and accelerated, taking advantage of the one-stop access to databases represented by the Health Data Hub and its skills in managing and analyzing the data made available.
Then, they will be able to consider access to data that is not currently accessible, and thus allow cross-analysis of new data sources. For example, by cross-referencing Social Security and hospital data, it would be possible to optimize the management of a disease through better monitoring of the results of treatments and their combinations. This could make it possible to support the launch of a drug through a more comprehensive offering, including services for physicians and patients.
Also, the very functioning of the Health Data Hub and its willingness to share open source tools or algorithms developed in previous projects will offer the opportunity to capitalize on existing work and thus generate value more quickly.
Finally, health industrialists will find in the HDH an additional place to forge new links and partnership relations with the actors of the ecosystem, whether public or private. Indeed, public players, such as research centers or hospitals, have expertise in using and setting up projects with the SNDS. Some private players, such as start-ups or other industrialists in the sector, offer technical expertise in the field of data, which is more advanced than that of pharmaceutical laboratories.
Barriers to be overcome to exploit the potential of the Health Data Hub
Despite the value that the Health Data Hub can bring to pharmaceutical and medical device companies, none were selected in the HDH’s first call for proposals, which closed in March 2019. There are several reasons for this absence.
First of all, the HDH initiative is still very recent and its processes are partly under construction. Thus, the data users’ charter has only been available since the end of February 2020. Secondly, any project must demonstrate a public interest. This notion, explained in the HDH’s documentation (2), is compatible with a commercial interest but imposes transparency of results, which can be limiting for a project aiming to develop a competitive advantage. Moreover, the data integrated into the HDH during a project are then made available for other projects by the platform, which raises the question of intellectual property management.
While there are still some barriers to sharing project results, the Health Data Hub remains a unique initiative with enormous potential to generate value for those who will be able to exploit its skills and opportunities. It is by taking an early interest in HDH calls for projects that the healthcare industry will be able to contribute its perspective and expectations as a potential user of data. The question for a health industry is therefore not whether to take an interest in the Health Data Hub, but rather to define to what extent this new player should be integrated into its future projects. For this reason, Alcimed will continue to closely monitor future developments concerning it.
About the authors
Anatole, Consultant in Alcimed’s Healthcare team in France
Lambert, Project Manager in Alcimed’s Healthcare team in France
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