Health systems in Israel and around the world have been dealing recently with the outbreak of the new Coronavirus (COVID-19). Since Covid-19 is a new disease, research into it is of great importance to developing new ways of management and treatment. Since the outbreak, healthcare organizations collected a lot of data about their patients. This information can be used to save lives, to find new drugs and procedures, and to develop policy tools that will enable optimal operation of the health care systems as well as consider the application of government responses like lockdowns and social distancing, which have detrimental effects to the economy and society.
To this end, the Israeli Ministry of Health is establishing a national Repository infrastructure for research about the Covid-19 disease. The Corona Research Repository will gather data collected in the Israeli healthcare system about the disease and allow using de-identified data for research under privacy and security policy measures.
The Israel Tech Policy Institute is presenting this project based on the information published by the Ministry of Health on May 7th, 2020.
Data available in the Corona Research Repository
The Repository will be based on various sources from the health system and other sources, including government agencies, and will include data on people infected with the new Coronavirus (‘confirmed patients’), in particular: data from the Ministry of Health’s Repositories; hospital Repositories: inpatients; inpatient diagnoses; clinical indices; inpatient examinations and procedures; HMOs Repositories; background diseases, clinical index, BMI and recent laboratory testing and drugs information. The data will be de-identified in order to exclude individual identification of the people included in it.
Furthermore, the Repository will provide data from anonymous questionnaires collected from the general population on related symptoms for the new Coronavirus. The Repository will also include the following public Repositories: population data by locality; population data by statistical area; mapping and other public repositories will be added later.
The studies in the Corona Research Repository will be conducted under the law and the Ministry of Health’s guidelines for conducting research. The studies will be carried out in virtual “research rooms” that comply with information security and privacy protection standards. The data will be used under the supervision and control of the Ministry of Health. The researcher will conduct the study only after obtaining all the required ethical and legal approvals. Data for research shall be de-identified following processes that reduce the ability to re-identify the data subjects. Access to data in the designated “research rooms” will only be authorized for a person who has been granted permission for that study. Any party who gets access to data in the study rooms will sign a confidentiality agreement and will commit not to try to re-identify the people from the data.
Corona Repository Opt-Out Mechanism – A person who was diagnosed with the Coronavirus and does not want his or her data to be used for research purposes may choose to opt-out. The Ministry of Health will establish a dedicated website and call center for the opt-out mechanism.
The technological infrastructure
The Repository will be cloud-based and hosted in the Ministry of Health cloud. It will allow the use of SQL, R, Python, Scala languages on Azure Databricks infrastructure and will include different open source directories. The “research rooms” will not have access to the internet nor to GitHub. The “research room” will be accessed through Notebooks.
Any request to export data outside the “research room” environment will undergo information security and de-identification processes by the Ministry of Health and may take up to 48 hours. The data exported must be aggregate and adhere to the principle of K anonymity = 15. The Ministry of Health will allow the export of code written during the research (algorithm). The management of the “research rooms”, including the preparation and de-identification of the research data will be performed by the Ministry of Health and will be supported by external technical service providers.
How much does it cost?
Currently, the use of the research platform will be free.
How to get access to the Corona Data Repository for research?
Researchers interested in researching the Corona Repository will apply through a new research portal. The research portal will allow the researcher to apply through a personal area. The researcher will authenticate by username and password. Access to the study room is dependent, among other things, on the existence of an ethical review board (Helsinki Committee) approval. The researcher can obtain such approval by submitting a request to the Ministry of Health ethics committee (currently in formation), or through an institutional review board.
Generally, the process for gaining access to the Corona Repository for research includes:
• Review of the research protocol and its compatibility with the purpose of the data repository, and the type of data held therein;
• Institutional review board approval, or an application for a hearing at the National (Helsinki) Committee for Human Medical Research at the Ministry of Health;
• Approval by the Health Data research committee of the Ministry of Health;
• The researcher shall sign a researcher Memorandum of Understanding,
• The researcher shall sign a confidentiality and remote connection agreements.
The Ministry of Health will give access preference to healthcare organizations and hospitals that provide data to the Repository – any health organization will be allocated several “research rooms” to prioritize researchers’ applications from contributing organizations.
Public Bodies requiring information from the Corona Repository for policy-making purposes can apply without Helsinki committee approval. The Ministry of Health will determine the degree of suitability of the Corona Repository application for such use and the process required to gain access.
The Ministry of Health will allow conducting studies under regulations applicable to research use of health information, including the relevant circular of the Director-General of the Ministry of Health, and operating procedure for the Corona Research Repository, that will be published in the coming days.
Disclosure of the studies carried out in the Corona Research Repository
The Ministry of Health will publish the list of the studies that have been granted access to the Corona Repository for Research. The publication will include the study title, the date of commencement of the study, the name of the principal researcher, and the name of the organization.
You can download the Ministry of Health Hebrew original document from here מאגר קורונה למחקר-מידע לחוקרות וחוקרים.
Data Sets related to Covid-19 that have already been made public by the government can be found here.