Table 5 Lesson learned for setting up a repository for pandemic surveillance and research based on electronic health records
Lesson | Description | Level at which action should be initiated | Main stakeholder groups involved |
|---|---|---|---|
Legal requirements | |||
Lesson 1: Prepare and implement a legal framework for pandemic surveillance and research | Currently, national legislation concerning the collection of EHR data is unclear, which may limit the use of EHR data and require additional data protection measures. There are different rules and regulations, the applicability of which is under constant debate. Therefore, preparing for different scenarios, and if possible implementing specific legal requirements and adequate data protection measures, will speed up the time needed to make EHR data available for surveillance and research when the data are needed | Macro | • Government/ policymakers • Legal experts • EHR software vendors |
Contextual circumstances | |||
Lesson 2: Ensure national coordination for reusing health data for the purpose of surveillance | Instead of the uncontrolled growth of many repositories, a national coordination body should ensure an efficient and effective flow of data from EHR systems to researchers analyzing the data. Before a new pandemic occurs, explore and describe how the coordination and the data flow could be organized in different situations | Macro | • Government or other national coordination body, and policymakers • Patients and medical professionals and organizations (e.g. represented by an umbrella organization) • Researchers and other data users • EHR software vendors |
Lesson 3: Ensure national coordination for data standardization | National coordination and the involvement of relevant stakeholders are needed to set definitions about recording data on a (new) infectious disease and other routinely recorded EHR data to make the data interoperable. Implement these definitions in a standardized manner in EHR systems. Start with the standardization of basic information in nursing homes’ EHR systems | Macro | • Government or other national coordination body, and policymakers • Medical professionals and organizations (e.g. represented by an umbrella organization) • Researchers and other data users • EHR software vendors |
Lesson 4: Work together with the medical profession, patients, relevant umbrella organizations, and other relevant stakeholders | Support from the medical profession, patients, relevant umbrella organizations, and other stakeholders is crucial to creating trust and awareness of the necessity of a surveillance system. Carefully consider and select the relevant organizations, and determine their roles and responsibilities in the surveillance | Meso | • Medical profession • Patients • Relevant umbrella organizations |
Lesson 5: Ensure coordination and clear communication between the collaboration partners | The time to prepare and discuss workflows and procedures is limited when there is an urgent and acute need for complete, accurate, and up-to-date datasets. Coordination and clear communication between collaboration partners help to ensure an efficient workflow to reach goals jointly. In addition, close collaboration with EHR software vendors operating in the nursing home sector is essential, as the EHR is the initial source of data. Early involvement of EHR software vendors enables them to provide input for developing a user-friendly feature to record and extract data, and scheduling the development and implementation | Micro | • Project coordinator • Collaboration partners • EHR software vendors |
Lesson 6: If possible, make use of an existing data infrastructure | As allocating expertise and resources (e.g. financing and technical expertise) to set up a new repository is difficult at short notice, connecting to a repository or data infrastructure that has already been developed may speed up the developmental process. However, such a repository should be sufficiently flexible to allow adjustment for the new form of data collection | Meso | • Government or other national coordination body, and policymakers • Repository or data infrastructure that already has been developed |
Lesson 7: Prepare a recruitment strategy with sufficient time and resources | The surveillance system needs a recruitment strategy to recruit enough healthcare organizations to share data. First, adequate and understandable information on aspects including the aim, necessity, method of data processing, how to inform patients, and privacy safeguards needs to be developed and sent to healthcare organizations. Second, time and resources are needed to follow up on the healthcare providers that have been informed, for example, to check whether they have read and understood the information and whether the organization wants to participate | Micro | • Recruitment team • Patients and medical professionals and organizations (e.g. represented by an umbrella organization) • EHR software vendors |
Lesson 8: Prepare a national, up-to-date overview of all nursing home organizations within a country | Develop a national overview with basic background information, such as the number of organizations and locations. Such an overview can already be developed and should be updated regularly regardless of whether there is a pandemic | Macro | • Government or other national coordination body, and policymakers • Medical professionals and organizations (e.g. represented by an umbrella organizations) |
Fitness for purpose | |||
Lesson 9: Continuously assess and improve the quality of EHR data | Several steps need to be taken to make routinely recorded healthcare data fit for surveillance and wider research purposes. Facilitators and barriers, and choices made in each of these steps may affect the fitness of the data for surveillance purposes. Surveillance systems require data that are up to date and reliable. A data quality assessment helps to gain insight into the quality of the data. The data quality assessment is a continuous process that includes discussing the results with the source of the recorded data (e.g. medical professionals and EHR software vendors) to interpret the findings and improve the quality of the data | Micro | • Projectteam of the surveillance system • Medical professionals and organizations (e.g. represented by an umbrella organizations) • EHR software vendors |