Rory Chen | Meet Our Researcher Series

Rory Chen is a Health Data Scientist whose work assists researchers make the most of the information collected in dementia and ageing studies.  At CHeBA, she leads the Dementias Platform Australia (DPAU) project, building systems that make dementia and ageing research data easier to find, access and share. With experience in both China and Australia across Universities and public health, Rory’s goal is to bring studies together, encourage collaboration and unlock data-driven discoveries that accelerate progress in dementia research.

How did you first get into research?

I’ve always enjoyed maths and science, and during my bachelor’s degree in China, I studied statistics and learned a programming language called SAS. This opened the door to an internship at the Tobacco Control Office in the Chinese Centre for Disease Control and Prevention, where I worked on the Global Youth Tobacco Survey. My role was to generate reports that went on to shape real policy - for example, introducing stricter penalties and substantial fines to prevent stores near schools from selling individual cigarettes to teenagers. 

Did you experience a ‘defining moment’ which led you to this field?

It was a combination of opportunities that led me into dementia research. After completing my master’s degree, I worked at UNSW’s National Drug and Alcohol Research Centre (NDARC), where I gained valuable experience on analysing complex health datasets. When I began looking for roles with greater responsibility and impact, the position at CHeBA stood out. Its ambitious mission and large-scale vision immediately resonated with me, and it felt like the right opportunity at the right time. Since joining, I’ve really valued the supporting environment and collaborative culture at CHeBA, which make it an inspiring place to pursue innovative research in dementia.

Do you have any personal interests or activities which are protective behaviours against cognitive decline?

I first picked up crochet after a friend encouraged me to try it and I was instantly hooked – the process felt almost meditative. Later, I taught myself to knit through online tutorials, and it quickly became another hobby. With a long commute to UNSW, I began crocheting and knitting while listening to audiobooks, turning travel time into something both enjoyable and productive. I really enjoy creating things with my hands - whether it’s a hat or something for my daughter - and there’s something special about wearing matching items together. Beyond the joy of making, I find knitting and crochet calming and restorative. They help me manage stress while also keeping my mind active and engaged – an everyday way of supporting my cognitive health. 

What are you currently researching?

At the moment, I’m exploring how AI tools can be integrated into DPAU’s data-sharing workflow to make tasks more efficient. With my programming background, I’ve developed several mini scripts in Python to automate repetitive work, and now I’m learning how AI can extend this even further. One example is an R-Shiny dashboard I created, which allows users to easily explore and compare study designs, sample sizes, start years and eligibility criteria across multiple studies. 

Previously, this process was highly manual and required the collection of information from study websites and publications which were then entered into a web application called REDCap. By combining AI tools with the workflow, systematic review and data extraction are becoming faster and more accurate, enhancing data accessibility and streamlining onboarding for new studies in DPAU. It’s an exciting time for me, as I continue discovering new ways to harness these tools to support research more effectively.

Why is your research important?

Previously, it was difficult for data custodians to share their datasets due to the time and effort required to prepare data and manage requests. Through DPAU, we aim to reduce those administrative burdens and provide researchers with effective and secure access to valuable research data. While it doesn’t directly produce research papers, our platform supports the wider research community, enabling collaborations that could ultimately advance understanding and treatment of dementia.

What do you love about working for CHeBA?

What I love most about working at CHeBA is the genuinely supportive and friendly environment, which starts with the leadership team and extends throughout the organisation. There’s a culture of respect, encouragement and collaboration that makes CHeBA not only a great place to work but also a place where creativity and innovation can thrive. I often find myself telling people outside of CHeBA just how special the workplace culture is here. I also really value the work of our communications and fundraising team – not every organisation is fortunate enough to have such dedicated expertise in media and outreach. In my day-to-day role, I work most closely with our Research Manager Dr Vibeke Catts, who has been an incredibly warm and supportive presence. Her guidance has been invaluable, and I’m truly grateful for her mentorship. 

What is the ultimate hope you have for your research?

In the short term, my goal is to onboard all COSMIC member studies onto DPAU, enabling secure and efficient data sharing of our international consortium. Looking further ahead, my ultimate ambition is to see all dementia and ageing-related research data made FAIR - findable, accessible, interoperable and reusable - and available to the wider research community. Achieving this would be a dream outcome, as it would maximise the impact of existing studies and significantly accelerate progress in understanding and addressing dementia.

Rory Chen is a Health Data Scientist at CHeBA and leads the Dementias Platform Australia (DPAU) initiative, which advances the FAIR principles of making research data more Findable, Accessible, Interoperable, and Reusable. With over nine years’ experience in academic and public health settings, Rory specialises in data management, statistical analysis, and reproducible data workflows. Proficient in R, Python, SAS, SQL, and AWS, she also contributes to the wider data science community through R-Ladies Sydney and the UNSW CodeRs Committee.