A trusted health data integration service delivering better health and research outcomes through novel data linkage mechanisms
Research into the management and delivery of healthcare is critically dependent on access to data, however much of this data resides across many data repositories and organisations, and is often highly protected and private.
At the Australian e-Health Research Centre, we have developed a new tool – HDI™ – which will provide private and secure access to an integrated virtual data repository, enabling research and analysis on a larger scale than would be possible on the individual data repositories alone.
Australia has a rich collection of health and community data repositories that could potentially be linked to help find answers to important health and social questions. Bringing these data repositories together would greatly enhance our ability to tackle diseases and understand complex issues.
Security & Privacy of Information
In health informatics, where personal privacy needs to be protected, there are enormous potential benefits to be gained by analysing health data at the cohort and population level.
Increasing concern for individuals’ privacy and confidentiality, coupled with a growing body of legislation and codes of practice governing the use of personal and health data, means that sharing health data for research purposes across health data custodian boundaries poses technical, organisational and ethical challenges.
HDI uses privacy-preserving linking algorithms to protect and identity and personal information.
Matching Patients in Multiple Repositories
Linking of patient records in different data repositories, while maintaining the privacy of patients, is core HDI functionality. Matching of patients across these data repositories is done using encrypted demographic data. This enables identifying information, such as the patient’s name and date of birth, to be protected.
HDI provides mechanisms to match the encrypted identifying data, even where the same data is represented in different ways or contains typographical errors.
Integration of Data Repositories
HDI supports the networking of health data repositories by:
- assembling data from existing multiple health data repositories to enable insight and to discover complex relationships
- enabling data sharing in a secure, privacy-protecting networked environment
- ensuring custodial control of data repositories, by providing a virtual data repository with local control of resources
HDI takes a federated approach to integrating data repositories, with web services used to query the data repositories and retrieve results for further analysis and reporting.
Metadata is used to describe the data repositories and present a view of the data to users. The metadata is also used in the planning and executing of complex queries across the data services.
Potential User Communities
There are various potential user communities for this product, from national and state health authorities and administrative organisations to major health institutions such as hospitals, private practice companies and insurers, as well as research entities like universities and institutes. HDI can be used to create an Enterprise Master Person/Patient Index (EMPI), providing a complete and accurate view of patient information from multiple sources across facilities and databases. Furthermore, HDI’s technology can be applied in a variety of other situations where access and control of data from multiple sources are key issues.
HDI & CSIRO's P-Health Flagship
HDI is also being utilised in CSIRO's Preventative Health (P-Health) National Research Flagship program. The P-Health Flagship consists of a group of partnerships between leading research institutions, health bodies and private companies to develop technologies, products and services focused on the early detection, prevention and treatment of a range of diseases. Their mission is to work together in preventative health research and facilitate commercialisation opportunities.
