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.

Requesting Data Access: A Step by Step Guide

Please review ANZHFR publications and approved projects in progress prior to submitting a data request. These can be found at https://anzhfr.org/research/

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.

Step 1 - Review Access Policy

Applicant to review ANZHFR Data Dictionary and Data Access Policy.

The current versions of the ANZHFR Data Dictionary (version 15, October 2022) and ANZHFR Data Access Policy (version 6, 03.06.22) are available from the ANZHFR website http://www.anzhfr.org Alternatively, they can be requested from the ANZHFR, Neuroscience Research Australia. Review both of these documents prior to submitting the request for data.

Step 2 - Submit Request

Complete and submit the ANZHFR Data Access Request Form as well as any other required documentation such as your study protocol. Please send these to [email protected].

Feedback is provided by the ANZHFR Data Custodian within 21 days of receipt of the application.

The Data Access Policy includes the ANZHFR Data Access Request Form. The form includes the list of ANZHFR variables that can be requested. Complete the form and the checklist of variables being requested and return to the ANZHFR Data Custodian, 139 Barker Street, Randwick NSW 2031 or via email [email protected]. The request will be reviewed and the ANZHFR Data Custodian will provide feedback to the applicant within 21 working days of receipt of the request.

Step 3 - Amendments

Step 4 - Ethics Approval

Submit and receive ethics approval from relevant HREC and governance body.

All research projects must undertake appropriate applications for ethics and governance approval and provide copies of the approved documentation and approval letter(s) prior to ANZHFR data being released. Commencement of the HREC and governance applications early in the application process will help keep to a minimum the timeline for the request and data release.

Step 5 - ANZHFR Data Management Committee Recommendation

ANZHFR Data Management Committee reviews data application and HREC approval and makes recommendation to ANZHFR Steering Group

Once the application has been accepted by the Data Custodian, it will be submitted to the ANZHFR Data Management Committee for review at its next scheduled meeting. The Data Management Committee meets four (4) times per year one month prior to Steering Group meetings. Data Management Committee recommendations will be tabled at the subsequent Steering Group meeting.

Step 6 - ANZHFR Steering Group Recommendation

ANZHFR Steering Group makes recommendation to Data Custodians (Australia /New Zealand) and applicant advised of outcome.

The ANZHFR Steering Group will make recommendation to Data Custodians (Australia/New Zealand) and will contact the applicant with the outcome of the review. At that time the ANZHFR will be able to provide a more definitive timeline for provision of the ANZHFR data. Usually, aggregated data requests take 6-8 weeks to complete after Data Custodian sign-off.

Step 7 - Data Extraction

Data extract from the ANZHFR provided to applicant 6-8 weeks after returning signed confidentiality undertaking.

Data variables will be extracted into a csv or excel file. The file will be encrypted and the file protected with a password. The file will be sent electronically to the applicant using a secure data transfer mechanism. The password to access the file will be delivered separately, via the telephone person-to-person. The applicant will use the password to open the file and then unencrypt the data in the file.

Step 8 - Prior to Publication

21 working days prior to public release of publication or presentation, the applicant provides any results that use ANZHFR data to the ANZHFR for review

At least 21 working days prior to any publication or presentation of results that use the ANZHFR data, the applicant will provide the information to be released to the ANZHFR Steering Group. The ANZHFR must be acknowledged and there must be inclusion of a statement within the publication/presentation that the analysis and interpretation of the data is that of the applicant and not the ANZHFR.

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 Dictionary - Version 15 (Oct 2022)

ANZHFR Data Dictionary Summary of Changes (2023)

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)