Foch Hospital will have a data warehouse operational on January 1, 2020

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At its launch, the EDS of Foch hospital will be "rather complete", said Elisabeth Hullier Ammar, director of clinical research. "It will contain the reports of emergencies, consultation and imaging, biology, the program of medicalization of information systems (PMSI) …", she listed.

This data "will be text only, even if the imagery will probably be integrated in the future," said Pauline Touche, data unit project manager at Foch Hospital. "For now, we are in the preparation phase," she added.

In total, 5 million documents will be collected in the DHS of Foch hospital.

"Our computerized patient record (IPR) goes back to 2004, but we have digitized records dating back to 2003," explained Pauline Touche. "The implementation of the DPI being done gradually from 2004, we do not have all the data of the first years."

The use of these data serves two purposes: "strengthen clinical trials and carry out epidemiological studies in-house," the organization said in a press release.

These data will allow the hospital "to develop a tool for predicting the state of health and possible relapse of transplant patients – for example in lung transplantation – and thus adapt treatments," he detailed.

To this end, teams are "building a database of lung transplants to enable faster patient data retrieval," said the project leaders.

Investment of 150,000 euros

The creation of the EDS required an investment of approximately 150,000 euros entirely provided by the establishment, explained Elisabeth Hullier Ammar.

The hospital Foch "chose the open source software Dr. Warehouse and the company Codoc as a provider for the maintenance and development of connectors between the information system of the establishment and the EDS," she said.

Regarding access to data, this will be reserved for research staff "subject to the approval of the ethics committee".

The ethics committee, which has already held a first session, is made up of doctors, caregivers, researchers, the entire data unit of the hospital, the Data Protection Officer (DPO), a jurist, the director of clinical research, "as well as external personalities," said Elisabeth Hullier Ammar, citing "social scientists, patients, and a patient association". She added again looking for representatives of "two or three" associations.

"The goal is to protect patients because we are all patients," added Pauline Touche, data unit project manager.

Hospital users will be informed of the payment of their data in the warehouse by "the paper and digital reception booklet, the waiting room display, the social networks and the website". she detailed. "We tried to rake broad, because the more informed patients are, the more they will join the project."

The hospital's website will enable patients to learn about current research and results from these data.

Finally, it will contain "information for patients who want to oppose the use of their data," said Elisabeth Hullier Ammar, adding that this refusal "will be automated".

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