Prior to the introduction of the Honest Broker Service in 2014, accessing health administrative data in Northern Ireland for research and analysis was difficult, if not impossible. Individual Health Trusts held and used data for their own purposes and there was not a service in place for researchers to apply to access data at a regional level.
Almost every interaction with the Health and Care services in Northern Ireland generate data, this routinely collected data is generated for purposes other than for research. Examples include clinical information from electronic health records, administrative health data, disease registries and epidemiological surveillance data which is collected for public health purposes relating control, prevention and eradication of disease.
Other health data is collected specifically during the course of research, for example during clinical studies or Trials.
There is huge potential to use health data to improve health and social care and services across the HSC. When data has been combined, researchers, doctors and other public health professionals can look for patterns in data.
Research topics can cover a wide range of issues, including health inequalities, improving our understanding of diseases, their diagnoses and treatment plans, and improving patient safety.
HSC service planning and policy evaluation are two key areas in which research can help aid decision making.
However, it is essential that data is kept safe and secure, to protect the confidential information of the service users who generate the data. The Honest Broker Service helps with this by:
- Removing identifiers such as name, address and date of birth prior to providing access. We also consider indirect identifiers and consider the context of the processing.
- Reviewing applications to access the data to ensure that the reason for accessing patient data is appropriate and that the researchers accessing the data have appropriate training.
- Ensuring legal contracts are in place before data is accessed.
- Providing a secure computing facility in which researchers access the data.
The following links provide a range of resources on why and how Health Data is used across the United Kingdom and the local and national strategies relating to it’s use.
Health Data Explainers:
Health data research explained – HDR UK
Introducing patient data | Understanding patient data
Public attitudes to data and AI: Tracker survey (Wave 3) (www.gov.uk)
Using data about people in research – UKRI
HSC and National Data Strategy Documents:
HSC Data Strategy | Department of Health (health-ni.gov.uk)
Better, broader, safer: using health data for research and analysis – GOV.UK (www.gov.uk)
Data saves lives: reshaping health and social care with data – GOV.UK (www.gov.uk)
Data Sharing and Linkage for the Public Good (osr.statisticsauthority.gov.uk)