Overview

Data are extracted via ACCESS using specialised health software developed at the University of Melbourne called GRHANITE™. Working with participating sites, the GRHANITE™ software is customised to extract data from each site’s unique database. On a regular schedule, GRHANITE™ automatically queries the database, extracts relevant details, removes all information that could identify a patient, encrypts the extraction file, and transmits it to ACCESS’s secure servers. Depending on their system, some services prefer to create their own data extracts with which GRHANITE™ interfaces instead of the database.

Services may vary in the types of relevant information available but generally ACCESS seeks to extract de-identified data on patient demographics (e.g., age, country of birth), pathology results, treatments and medications, and behavioural details (e.g., sexual orientation).  ACCESS never collects patient names, mobile numbers, addresses or dates of birth.

ACCESS cannot identify individual patients.  All patients are assigned a numerical code and no information that could identify an individual (e.g., name, date of birth) is collected.  When ACCESS data are reported, aggregate stratifications containing fewer than five people are suppressed to further protect patient anonymity.

Data extracted via ACCESS are encrypted at all times; the decryption key exists only on the ACCESS server, which means that if a third party were to intercept data or gain access to the database they would be unable to read the data. Only a very small group of researchers have access to the database and they follow a strict security protocol for accessing and managing all information.

Participating services will be required to install data extraction software on their network and work with the ACCESS team to develop the extraction processes.  Participating sites are also encouraged to nominate a site investigator to represent the site’s interest and a site contact to address technical issues should they arise.  There are no other participation requirements and ACCESS covers all costs associated with getting involved.

ACCESS receives core funding from the Australian Department of Health with the aim to monitor Australia’s progress in the control of blood borne viruses and sexually transmissible infections. In addition, the governments of New South Wales, Victoria, Northern Territory, Western Australia and the Australian Capital Territory provide funding for state level outcomes. Funding for particular outcomes is also provided by the Blood Borne Virus & STI Research, Intervention and Strategic Evaluation Program (BRISE), an NHMRC Project Grant (APP1082336) and a NHMRC Partnership Grant (GNT1092852). There is no cost to participation.

Consent from individual patients is not required, and there are several reasons for this. First, hundreds of thousands of patients pass through services where ACCESS operates, and it would be impossible to obtain consent from every individual. Also, the risks associated with the project are minimal because all extracted data are completely anonymous. In addition, the collection of patient data is part of routine care at participating services. Approval for ACCESS has been provided by Ethics Committees in every Australian jurisdiction, and this includes a waiver of individual consent. Finally, posters and information sheets for public display are provided at all sites to inform patients about the project and how extracted information is used.