Data Steward in the Spotlight: Anne Aarts

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.

Anne Aarts is a data stew­ard pro­vid­ing data man­age­ment sup­port for researchers in the Depart­ments of Bio­med­ical Engi­neer­ing and Indus­tri­al Design at Eind­hoven Uni­ver­si­ty of Tech­nol­o­gy. 

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.

You can read more about the Data Hor­ror Escape room and play the game. Thank you Anne for being our ‘data stew­ard in the spot­light’ and for shar­ing your sto­ry with us!

Writ­ten by Con­nie Clare (4TU.ResearchData)
Cov­er image illus­trat­ed by Con­nie Clare (4TU.ResearchData)