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Why is linking health data important?

Record linkage allows a more complete picture of the health of the population than was previously possible. The information can be used to study:

  • the safety, quality and costs of health care by linking information on different treatments with outcomes such as emergency department visits, admissions to hospital and deaths
  • the relationships among personal, economic and lifestyle factors and health through linking data from research studies and surveys with outcomes such as emergency department visits, admissions to hospital, cancer notifications and deaths
  • societal and community influences on health by linking health data with information from other agencies, such as education and community services.

The CHeReL provides advice on the design, cost, feasibility and process of linkage studies. We offer four types of record linkage services:

  • Linkage between and within records held in the Master Linkage Key (MLK).
  • Linkage of other datasets to the MLK.  Often researchers are interested in a particular cohort of people, and want to examine their outcomes or history using routinely collected administrative records.  For example, a cohort of people may be receiving a particular intervention, and the researcher wants to determine the effectiveness of this intervention as measured by later hospital admissions, emergency department presentations and mortality.
  • Linkage of two or more datasets that are not included in the MLK - for example, linkage of educational outcome to child protection data
  • Deduplication of datasets.  The CHeReL regularly conducts this kind of linkage for data custodians to identify duplicate records within a dataset and records which belong to the same person. 

Biolink

Biolink is a service of the Centre for Health Record Linkage (CHeReL), offered exclusively to clients of the NSW Health Statewide Biobank (NSWHSB). Using state-of-the-art data linkage methodology and expert advice, Biolink enables the biospecimens stored at NSWHSB to be longitudinally linked with a broad range of routinely collected health data about participants. Linkage to routinely collected data provides an efficient and cost-effective alternative to manual follow up of participants’ health service use and outcomes.  

 For Collection Custodians and researchers using the NSWHSB, the CHeReL provides a comprehensive data linkage service that includes:

  • Establishing data linkage arrangements for Collection Custodians who deposit biospecimens with NSWHSB
  • Enabling access to linked data for researchers who withdraw biospecimens from NSWHSB
  • Providing expert advice on ethics approval and data custodian approvals

CHeReL has a dedicated Biolink Research Project Manager, who can provide more information on accessing services and access conditions.  The Biolink Research Project Manager can be contacted at MOH-Biolink-Cherel@health.nsw.gov.au.

What type of data can be requested?

The CHeReL can link consenting participants to a broad range of routinely collected data from NSW Health and other administrative or research data collections.  

Examples of routinely collected NSW Health data and accompanying data dictionaries can be accessed at /datasets.    

A Biospecimen Linked Standardised Data Asset (BLSDA) is being developed to simplify access to linked NSW Health data. The BLSDA will be a core minimum health data asset of linked NSW Health data collections for the participants in a number of strategic biospecimen collections held in the NSWHSB.  The NSW Health data asset will be available off the shelf at no cost to eligible researchers.  Approval is required in accordance with the Strategic Collection Access Policy available at https://biobank.health.nsw.gov.au/researchers/biospecimen-collection-grants/

How record linkage works

Record linkage brings together information that relates to the same individual, family, place or event from different data sources.  In this way it is possible to construct chronological sequences of health events for individuals.  Combined, these individual 'stories' create a larger story about the health of people in NSW and the ACT. 

An example is a study by a research team who want to investigate whether bowel cancer screening can improve survival.  To address this question the researchers require information about people’s bowel cancer screening from a survey, as well as their cancer incidence, relevant hospital treatment and deaths that are recorded in administrative data collections managed by government agencies.

Once the relevant government agencies and a human research ethics committee approve the research project, the data can then be securely linked by the CHeReL and made available to the researcher. 

The process by which data is securely linked and made available is as follows:

01

The first step in data linkage is to split the records from each dataset into two separate files. To protect privacy, the identifier information such as names and addresses is separated from the content information, like cancer type or screening history.  The two separate files from each dataset are stored and handled separately. The identifier data is used in the Data Linkage process and the content information without names and addresses is used in Data Integration.

02

CHeReL’s Data Linkage Unit applies a combination of matching methods to the identifier data to identify and distinguish between individuals, e.g. between this John Smith and that John Smith. The identifier data belonging to each individual is then assigned an arbitrary Person Number which replaces the name, address and other identifying details.

03

Using an encrypted version of the arbitrary Person Number, CHeReL’s Data Integration Unit then makes a research Project specific Person Number for each individual (PPN).  A different PPN is created for each research project.  This PPN is then joined to the relevant survey, cancer and hospital data that has been approved for the research project by the relevant government agencies and human research ethics committee.   All records for an individual in any approved project dataset will have the same PPN.  The approved data is released to the researcher, along with conditions on the use of data. 

04

Using the PPN that is attached to the survey, cancer and hospital data, the researcher can combine records for an individual without accessing information about their identity. This helps to ensure that privacy is protected and research in the public interest continues to improve the health system and health outcomes.

Pricing

The Centre for Health Record Linkage (CHeReL) charges a fee for the linkage of records. The fee matrix below shows the estimated fees for CHeReL linkage services, depending on the cohort size and the number and types of datasets to be linked.

For example, a research project with a cohort of up to 5,000 persons, using up to 10 datasets which includes a combination of 5 MLK and 5 external (non-MLK) datasets, will cost approximately $12,000, excluding GST, for the linkage service.

Linkage fee matrix showing the estimated fee (exc GST) for a CHeReL linkage service based on the cohort size and number and types of datasets to be linked.

Cherel Pricing Table V1

 

*MLK – CHeReL master linkage key datasets

The following details what is included and excluded in calculating the estimated fee for the linkage service:

  • The price estimate is exclusive of GST, which is payable on top of the estimated amount above.
  • Estimates assume clean data is provided, i.e. identifiers are available and content is linkable. Should a data cleaning service be required, additional fees will apply.
  • Estimates assume that each non-MLK dataset to be linked comes in one file. Additional data sourcing fees applies for more than one file per dataset.
  • Additional linkage fees (starting from $5,000) apply for the following types of linkage services: case-control (eg requiring control selection), family (eg linkage of mother and child records), cross-agency linkages (e.g. ABS and AIHW) and cross-jurisdictional linkages (eg NSW and Victoria).
  • Additional fees may apply for projects requiring more intensive project management, or where data extraction is required.
  • A more detailed quote will be provided after your full application has been submitted to the CHeReL.

For more information, contact the CHeReL at MOH-CHeReL@health.nsw.gov.au.

Please note, the 45 and Up Study may charge a fee for data extraction which is not included in the linkage fee. For more information, please contact the 45 and Up Study at 45andup.research@saxinstitute.org.au.

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