How does ACCESS extract data?
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 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.
What data does ACCESS collect?
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 collected the names of patients, mobile numbers, addresses or dates of birth.
Can ACCESS identify individual patients?
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.
Are data collected via ACCESS secure?
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.
What does participation in ACCESS entail?
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.
Who pays for ACCESS?
ACCESS receives core funding from the Australian Department of Health. 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.
Is individual patient consent required?
Consent from individual patients is not required. There are several reasons why individual consent is not sought. First, hundreds of thousands of patients pass through ACCESS services and it would impossible to obtain consent from each. Second, the risks associated with the project are minimal because all extracted data are completely anonymous. And third, the collection of patient data is a part of routine care at participating services. Ethical review of ACCESS including an individual consent waiver has been provided by 15 individual ethics committees in every Australian jurisdiction. Posters and information sheets are provided to sites to inform patients of the project and explain how the information is being used.