Wednesday, 2 March 2022
Department of Health
213. To ask the Minister for Health the expected timeframe for the establishment of the national diabetes registry; the engagements that have taken place in relation to eHealth and the registry; and if he will make a statement on the matter. [12012/22]
In September 2019 Sláintecare Integration funding was allocated to the HSE to design and procure a National Diabetes Registry demonstrator product and develop a full specification plan for a National Diabetes Registry. It was intended that the registry would be in place by 2021. However, the project was paused as it was dependent on the input and expertise of key HSE staff who were redeployed onto urgent on-going COVID-19 work.
The development of a National Diabetes Registry remains a priority, and following substantial increases in investment in eHealth, is now being considered as part of a wider review of Ireland’s health information strategy. The diabetes registry, along with other disease-specific registries, will operate as “virtual” registries and will use existing health and social care records to enable the monitoring of the incidence and prevalence of disease in Ireland.
Virtual registries will identify people with specific diseases in data extracted from systems such as hospital inpatient and outpatient records, laboratory tests, and pharmaceutical data collections. Each “virtual” registry will be allowed to require and request the provision of relevant information from health and social care organisations, and anyone who is providing a health or social care service to ensure each registry will have complete coverage of its area of relevance.
Virtual registries will allow for the development of disease-specific registries in a way that maintains comprehensive and up-to-date information that will meet the needs of many different stakeholders.
The Department is currently preparing a Memo for Government for approval-in-principal of a Health Information Bill, to improve the care people receive, their outcomes and the well-being of the population by ensuring high quality information is available to the public, health and social care professional, researchers and policymakers.
Included in the design of this Bill is a provision to enable the operation of disease-specific “virtual registries”, where information on disease diagnoses and treatment from healthcare providers are efficiently collated, combined and quality-checked from administrative records to create a database akin to an active registry for each disease. This will greatly improve the potential to monitor rare-disease prevalence in Ireland