Anne Aarts joined the team of data stewards at Eindhoven University of Technology in May last year. Here, she talks about her transition from cancer epidemiologist to data steward during the Covid-19 pandemic.
Before becoming a data steward, Anne studied the epidemiology of breast and colorectal cancer at Radboud university medical center in Nijmegen. Her PhD research was focussed on the development of tailored follow-up programmes for cancer survivors.
Anne shares some background to her academic research. “Cancer is a chronic disease that requires ongoing medical attention. Cancer survivors enter post-treatment follow-up programmes wherein health care professionals undertake frequent checks to see if the cancer has returned, evaluate potential and long-term side effects of cancer treatment, and provide additional care if necessary.”
She explains that post-treatment follow-up programmes can be improved to better meet patients’ needs. “It’s currently unclear how many patients are monitored within follow-up programmes; whether their cancer recurs; or, how many times they return to the hospital for treatment.”
“Follow-up programmes are consensus-based rather than evidence-based. They usually take a ‘one size fits all approach’ and don’t account for patient age, tumour type or treatment used. Such variables, however, are highly likely to affect health outcomes for patients and should be considered to provide specialised health care for cancer survivors,” she adds.
Anne teamed up with statisticians from the Wolfson Institute of Preventive Medicine at the Queen Mary University of London to investigate the feasibility of tailored follow-up programmes using mathematical models previously applied for national cancer screening programs.
Her research resulted in publications about moving ‘towards evidence-based follow-up intervals for breast cancer survivors’ and investigating ‘test sensitivity of mammography and mean sojourn time over 40 years of breast cancer screening in Nijmegen (The Netherlands)’.
From scientist to data steward
Whilst Anne remains enthusiastic about biomedical research, she decided to make the transition from cancer epidemiologist to data steward during the Covid-19 pandemic.
Anne explains that her decision to pursue a career in data stewardship was driven by her passion for education.
“During my doctoral studies, I regularly taught a two-week course about designing research projects for Medical students who were preparing to undertake their scientific internships. I thoroughly enjoyed helping them plan their projects and guiding them through every step of the research process.”
She continues. “Becoming a data steward has allowed me to combine all of my skills and interests. I’m happiest when helping people and my new role gives me the opportunity to do that.”
Anne says that her new data support role is very different from her research role. “As a researcher, I would take time to plan my experiments and execute them. Now, as a data steward there’s no plan; my daily tasks are extremely varied and depend on incoming queries and questions from researchers.”
“It’s exciting! I experience new data management challenges everyday. What’s more, there’s no instruction manual or methodology to follow. Data stewardship is a new and fast-evolving profession so you have to learn on the job. It’s a bit like building a plane whilst flying it!”
Starting during the pandemic
Getting to grips with a new job role virtually can be a daunting task. Anne emphasises the importance of having a support network to help new data stewards learn and gain confidence in their new role.
“Becoming a data steward is a steep learning curve at the best of times, never mind when having to work remotely,” she says. “New data stewards cannot know all of the solutions to researchers’ problems so it’s important to be part of a helpful and supportive community to ask questions and share ideas.”
During the pandemic, the TU/e data stewards scheduled regular online knowledge sessions to discuss project use cases, troubleshoot problems and find solutions together. “As spontaneous coffee or water cooler chats are no longer possible, our team meetings have been essential for learning and bonding with one another.”
Engagement and Education
Anne believes that ‘education is the best way to engage’ researchers. She is involved in the Eindhoven School of Education and teaches parts of the University’s research data management (RDM) training and courses.
Anne is also an active member of 4TU.ResearchData’s Engagement and Education working group which provides a space to exchange knowledge and ideas about how to raise awareness about good RDM practice through education.
“I’m in favour of cross-institutional collaboration, and sharing training materials and resources across the 4TU partner institutions” says Anne. “We’re all aiming to provide support for researchers so that they can comply with institutional, journal and funder policies, and move towards open and sustainable research. Education is the best way to do this and we can learn from one another.”
Since starting her role in the pandemic, Anne has taken an interest in ‘digital education’ as TU/e’s RDM training courses have moved from an in-person to online setting.
“We have limited time and resources to teach researchers remotely, so it’s critical that our training sessions are interactive, engaging and efficient. I’m excited to explore new methods and tools for engaging researchers online to hold their attention!”
In October last year, Anne co-created the Data Horror Escape Room with colleagues from Vrije Universiteit Amsterdam and Leiden University in the Netherlands. The digital escape room introduces some basic data management concepts and offers a fun way to educate and to prompt discussions with researchers.