Anne Eskes is a senior researcher, lecturer in nursing and coordinator of ACHIEVE, the Amsterdam Centre for Innovative Health Practice, at AUAS’s Faculty of Health. ACHIEVE’s research focuses on innovations in patient care.
As coordinator, Eskes is involved with development and implementation of research policy, research integrity, project management and data management. ‘Our faculty doesn’t yet have its own data protocol, which is a requirement of the central UvA/AUAS guidelines for Research Data Management (RDM), but we’re working hard on this. We have to compare all the existing protocols to produce one set of guidelines that meets all the requirements.’
‘We primarily conduct research with patients and we do a lot of work with lecturer researchers who are also employed by the Academic Medical Center (AMC). So we already have to comply with a lot of guidelines, such as Good Clinical Practice, the Medical Research Act and the AMC protocols for medical research.
What’s more, many of our researchers have followed the Basic Course on Regulations and Organisation for Clinical Researchers (BROK) and have obtained the BROK qualification, which means that they comply with the stringent requirements imposed on medical research. We are comparing all these guidelines with AUAS’s RDM guidelines to see what still needs to be done.’
‘Research involving patients is subject to strict privacy regulations. It’s not easy for us to share our data because, in principle, the patient gives their consent to specific research. Also, we have to keep hard copies of all these signed ‘informed consent’ declarations. We can’t just store them digitally. We would ultimately like to share research data however, so we are looking into the options.
As researchers, we just have to get used to the idea that other researchers might use our data. We have to learn to think in a different way. We’re already trying to publish as much as possible in open access format - the main issue is the cost.’
‘Our researchers are well aware of the importance of secure storage and effective management of research data. What we have to do now is make RDM easier for them. The Library’s centralised RDM system offers us a number of interesting opportunities. At ACHIEVE, we already work with Research Manager, a program which enables researchers to collect and securely store their data. And an independent party can check whether this is being done according to the rules. Researchers export the data from Research Manager to an analysis program.
The central RDM system could be a good place to archive these processed datasets, and to archive qualitative data, such as recordings of interviews. It offers opportunities that Research Manager cannot.’
‘In the central RDM system you can archive data in a digital repository. This is a requirement which is increasingly being imposed by our research funders, such as NWO. You can also assign management rights to different people, so you can still access the data if a researcher has left. And, as I said, increasingly, we want to work towards the sharing of our research data. It’s just a shame that we don’t yet know what the central RDM system will cost. We need to know this when estimating the cost of a grant application.’
‘In the short term, our main objective is to streamline RDM more within ACHIEVE. We plan to draw up guidelines to ensure that all researchers collect and store their data in a uniform way, with the same coding, for example. That way we can also merge datasets for further analyses.’