Announcement - New Direction in Research Partnership

The Centre for Health Research Illawarra Shoalhaven Population (CHRISP) ceased operations on 31 March 2023. The recommended first point of contact for queries is the Research Operations unit for the Illawarra Shoalhaven Local Health District.

STATEMENT FROM THE ILLAWARRA SHOALHAVEN LOCAL HEALTH DISTRICT (SEPTEMBER 2022) IMPORTANT UPDATE FOR RESEARCH TEAMS (MARCH 2023)

CHRISP data is managed using the IHIP data platform, which comprises a non-identifiable databank with data sourced from the Illawarra Shoalhaven Local Health District and other third party data sources, a health records linkage system, and research project datasets for release to clinicians and other researchers.

Learn about CHRISP data

The Illawarra Health Information Platform (IHIP) is structured as follows:

  • A non-identifiable health databank with data sourced from the Illawarra Shoalhaven Local Health District and potentially other sources
  • A health records linkage system
  • Research project datasets for release to clinicians and other researchers, following relevant approvals

IHIP’s research databank was ethically approved on the basis that it is non-identifiable. This means that individual identifiers are not held in the IHIP research databank, which protects the privacy of individuals. A health records linkage system is an information system which can be used to link data about individuals from difference sources (using identifiable information such as name, address and date of birth).

The IHIP data linkage protocol has been ethically approved. When linking health data, IHIP receives and handles identifiable information and health data separately, and this ensures that privacy is always maintained. After a data request is approved, the CHRISP team will create a research project dataset. This is an extract from IHIP of the data items and records requested – either in the unit record or aggregate form.

Other features of IHIP

The collaboration portal is a website where you can log in and securely download your research project dataset.

What is the technology behind IHIP?

IHIP was implemented and managed by DXC under contract to ISLHD between 2016 - 2019 and will be managed by iQ3 in 2020. IBM InfoSphere Information Server is used to manage IHIP data and to implement the health records linkage system. IHIP databases are implemented using Microsoft SQL Server. These are industry standard, enterprise-level software packages.

The Collaboration Portal is implemented using Liferay and we use Orbeon Forms for the IHIP Online Forms. 

Download the IHIP Architecture flowchart (pdf)

Primarily, the data held in the Illawarra Health Information Platform (IHIP) is sourced from ISLHD information systems and was collected during routine clinical care. IHIP can also be used to link data from other sources – including data collected outside core ISLHD information systems, as part of previous research projects, or data from other third-party custodians. The information below describes all data held by CHRISP in detail.

Emergency Department

Demographic, activity and some clinical information about patients presenting to NSW public hospital emergency departments is collected for the purposes of monitoring waiting times, planning and improving the quality of service delivery.

Download the Emergency Department Data Dictionary (pdf)

Mental Health Ambulatory

The scope of the extract data records for the Community Mental Health Ambulatory feed is extended such that each record represents an activity. Attendance represents patient contact. The activity represents an activity carried out during the contact (attendance).

Download the Mental Health Ambulatory Data Dictionary (pdf)

Medical Imaging

The activity data required from radiology systems relates to completed, billed status and requests.

Download the Medical Imaging Data Dictionary (pdf)

Sub-Acute Non-Acute

The admitted sub-acute and non-acute patient episode data stream cover the additional data elements collected for admitted patients receiving sub-acute or non-acute care, which included rehabilitation and palliative care. The dataset includes the clinical assessment scores for sub-acute and non-acute patients.

Download the Sub-Acute Non-Acute Data Dictionary (pdf)

Waitlist

The Ministry of Health has performance targets relating to the time patients wait for planned services that Local Health Districts and Specialist Health Networks are expected to meet. The Waiting Times Data Collection is a unit record data collection of all patients booked on the public hospital waiting list for planned and elective surgery/clinical care provided on an admitted patient basis.

Download the Waitlist Data Dictionary (pdf)

Admitted Patient

Consists of patient demographic and administrative information related to admission and separation (Admissions, Transfers, Separations) recorded as the patient moves through the hospital. Also, Disease Index information (DI) which is recorded later as the medical case notes are written up and completed and which relate to patient conditions diagnosed, diagnostic or treatment procedures performed and cancer notifications raised.

Download the Admitted Patient Data Dictionary (pdf)

Mental Health Outcomes

The Mental Health Outcome and Assessment Tools (MH-OAT) state-wide initiative aims to improve the quality of mental health care in NSW.  The initiative consists of two major components: Standardised clinical documentation and standardised outcome measure. The standardised clinical documentation is an NSW Health initiative.

Download the Mental Health Outcomes Data Dictionary (pdf)

Pathology

The activity data required from pathology systems relates to completed, billed status and requests.

Download the Pathology Data Dictionary (pdf)

Perinatal

The Perinatal Data Collection covers all births in Illawarra Shoalhaven Local Health District public hospitals. The dataset covers information through booking and antenatal visits, labour and birth, discharge and community care.

Download the Perinatal Data Dictionary (pdf)

Theatre

The Operating Theatre data set covers the planning and provision of services provided within an NSW Health theatre suites and procedure rooms, including both surgical, medical and diagnostic procedures.

Download the Theatre Data Dictionary (pdf)

Non-Admitted Patient

Demographic and service-related event information occurring when a patient interacts with an outpatient service unit. Patients are classified as non-admitted patients. Data available from 1 July 2012.

 

Data linkage is the process where data is linked across datasets using common identifiers such as name, address and birth date. This linkage enables multiple data sources to be brought together, allowing for meaningful research and evaluation across a broader range of data.

The linked data in the Illawarra Health Information Platform (IHIP) is de-identified before any research is undertaken. This protects the individual’s privacy and maintains the integrity of the IHIP project. In fact, identifiers are only used during the actual linkage of the data.

Encrypted (hashed) Unit record identifiers are assigned to project datasets. This prevents any sort of ‘backwards mapping’ of identifiers contained within the data.

The flowchart below contains a high-level overview of how data linkage works in IHIP, showing flows of data from source systems through to non-identifiable research datasets delivered to researchers.

Download the IHIP Data Linkage Process flowchart (pdf)