Data Access
Data Access Policy
PURPOSE AND SCOPE
Access to data collected and collated by the Australian and New Zealand Hip Fracture Registry (ANZHFR) is guided by protocols and procedures to maintain privacy and confidentiality. Provision of data to the registry is subject to the study protocol, which has been approved by Human Research Ethics Committees in each jurisdiction, and the relevant Research Governance Offices of participating hospitals. This document provides guidance to the ANZHFR’s approach to dealing with requests to access registry data, and outlines the procedures for applicants to follow when making a request for access to data.
BACKGROUND
The ANZHFR holds identified data relating to people 50 years of age and over admitted to hospital with a fractured proximal femur. The registry contains data submitted by participating hospitals, and it is important that the privacy of this information is maintained. This policy is intended to protect privacy and confidentiality when considering requests from third parties to access the data held in the registry. In considering requests to access and use ANZHFR data, the primary aim of the Steering Group is to protect the individual participant’s privacy.
APPLICANT RESPONSIBILITIES
- People accessing ANZHFR data are responsible for ensuring appropriate security for the storage of any material, confidential or otherwise, held in any format including on computing systems.
- A date for data disposal must be included in any request for access to data.
- In accessing de‐identified data, no attempt will be made to re‐identify individuals in the data provided by the ANZHFR.
- For research proposals, ethics and governance approvals must be provided prior to the release of data.
- For research proposals, a schedule for the reporting and dissemination of results must be included in the submitted project outline.
- For research proposals, a copy of the Human Research Ethics Committee (HREC) annual progress report and acknowledgement must be submitted to the ANZHFR ([email protected]).
Approved projects
Please review the projects previously approved by the ANZHFR. The ANZHFR prefers collaboration of research using ANZHFR data, where possible, rather than duplication of research.
Using linked data to evaluate and improve hip fracture care
Principal Investigator: Dr Lara Harvey - [email protected]
Artificial intelligence and machine learning to personalize care of patients with hip fractures
Principal Investigator: Professor Ruurd Jaarsma - [email protected]
Total hip joint replacement versus hip hemiarthroplasty for subcapital neck of femur fractures: return to mobility and residence
Principal Investigator: Dr Mithun Nambiar - [email protected]
Effect of hip fracture and pain management pathways in treating hip fracture patients
Principal Investigator: Dr Mithun Nambiar - [email protected]
Care provision and outcomes in older people with and without cognitive impairment who sustain a hip fracture
Principal Investigator: Dr Morag Taylor - [email protected]
The impact of COVID-19 in Australia and New Zealand on hip fracture care
Principal Investigator: Dr William Liaw - email [email protected] should you wish to get in contact
Patient characteristics and hospital-level factors influencing actual first day mobilisation post hip fracture surgery
Principal Investigator: Dr Victoria Woodcroft-Brown - [email protected]
The effect of type of anaesthetic on delirium after surgery for acute hip fracture: an instrumental variable analysis
Principal Investigator: Dr Lara Harvey - [email protected]
Standard of care and outcomes for Māori patients with neck of femur fractures – an ANZHFR study
Principal Investigator: Dr Simon Young - email [email protected] for further information
Association of delirium and nutritional status in Australian adults following hip fracture surgery
Principal Investigator: Dr Saif Hamdoon - [email protected]
Updated mortality risk post hip fractures by age, sex and ethnicity for New Zealand
Principal Investigator: Dr Naji Ghamri - [email protected]
The impact of frailty and malnutrition on clinical care and outcomes following acute hip fracture
Principal Investigator: Dr Lara Harvey - [email protected]
Non operative versus operative management of hip fractures in Australia and New Zealand
Principal Investigator: Dr Carla Davies - [email protected]
Requests under consideration
Please review the projects previously approved by the ANZHFR. The ANZHFR prefers collaboration of research using ANZHFR data, where possible, rather than duplication of research.
The association between out-of-hours surgery and postoperative mortality in hip fracture patient
Principal Investigator: Dr Jesse Smith
The Impact of Rurality on the Standard of Care and Outcomes in Patients with Neck of Femur Fractures
Principal Investigator: Dr Kate Hurst
Improving understanding of hip fracture journey for people in Aged Residential Care (New Zealand)
Principal Investigator: Mr Ulrich Bergler
Incidence, treatment and outcomes of hip fractures for older Aboriginal people in New South Wales, Australia
Principal Investigator: Ms Leanne McCarthy
Impact of early geriatric assessment on outcomes for older people after hip fracture
Principal Investigator: Dr Amelia Morrey
Requesting Data Access: A Step by Step Guide
Please review ANZHFR publications and approved / in progress projects listed above prior to submitting a data request.
A step to step guide on how to apply for access to the ANZHFR data is provided below. To download a PDF version of these steps, click here.
ANZHFR Data Access Request Form
As outlined in the steps above, please email your completed ANZHFR Data Policy & Access Request Form to [email protected]
ANZHFR Data Dictionary
The ANZHFR Data Dictionary lists all active variables used in the Registry as well as provides an explanation of what the variable represents.
ANZHFR Data Variable Concordance Table
Please find below the ANZHFR Concordance Tables outlining changes to variables in previous years. This document includes variables that are no longer active or collected by the registry.
ANZHFR Concordance Table - Patient Level Audit - Version 3 (2023)
ANZHFR Concordance Table - Facility Level Audit - Version 2 (2022)