Ethics and governance is not just an administrative task – it is a critical part of ensuring the protection of everyone involved in clinical research, both participants and researchers.

As the ethics and governance coordinator for BioGrid, Allison manages both project and data linkage ethics and governance for BioGrid. Allison ensures that ethics applications and approvals requesting access to data connected to the BioGrid platform comply with relevant privacy legislation and the NHRMC guidelines for medical research, and are kept up-to-date as required.

She also prepares project protocols and associated documentation for some of BioGrid’s larger national research projects such as ANZTHOR and APPRISE.

In addition, Allison manages BioGrid’s Access Request System, receiving the access requests for projects and administering them through BioGrid’s internal processes and relevant Human Research Ethics Committees, if required.

One of the greatest challenges in her role is the many different requirements for ethics and governance, which can vary by jurisdiction and organisation. However, the underlying importance of ensuring that specific ethics and governance requirements are addressed before accessing health data for research cannot be questioned.

She emphasises that it’s important for the Principal Investigator to have good oversight of the generation and management of data for their project and consider the impact on participants and organisations if not managed appropriately.

Therefore, the questions she helps researchers answer cover fundamental issues such as “what is the process for accessing data?”, “who will have access to these data?” and “how will these data be stored for the project?” The end result is that both data custodians and ethics committees can be confident that the data being accessed are managed correctly, and that participants’ privacy is being protected.

Who is Allison?

Allison started her career in molecular biology, gaining her doctorate then progressing to a post-doctorate in Philadelphia. After some time in the lab, she transitioned into epidemiology then moved back to Melbourne at Cabrini Hospital, managing clinical trials and project managing a clinical trial network for muscular skeletal conditions.

She joined BioGrid in November 2020 in her current role. Her background gives her an in-depth understanding of what BioGrid’s members are trying to achieve and the challenges they need to overcome to do it.

Allison’s tips for researchers seeking ethics and governance approval via BioGrid

1. It’s challenging for busy clinicians to find the time to log into their ethics and governance systems and Allison suggests delegating some of this work to team members who may have more time to help with the background work.

2. When using BioGrid’s Access Request System, check the BioGrid website for what information you need to enter into the system and have everything ready. The current Access Request System doesn’t allow users to stop during entering a request and save their progress. To avoid loss of  information Allison advises to complete the request in one sitting. BioGrid is planning to upgrade the Access Request System which will address this and other issues that are the result of an old legacy system. If you do have any issues with the current system, please contact BioGrid for assistance.