If you work with publicly funded register data, you have to balance ethical aspects with the transparency needed to make research results as useful as possible to us all. This says Karina Nilsson, SND domain specialist for register-based research.
Karin Nilsson got her doctorate degree in Human Geography, but is now Senior Researcher and Associate Professor in Sociology at Umeå University. In her own research, Karina has been using register data for a long time. She has researched the composition of families and households, and investigated what significance they have for different welfare aspects of individuals’ lives, such as health, income, education, and work. At present, she is part of a large research project that uses data from Statistics Sweden (SCB) and the National Board of Health and Welfare to ascertain how children’s school results are affected by various factors, with a particular focus on the individual’s and the family’s health.
–Register data are data from public authorities and various register holders. The data I’m working on now, for example, are total population data which cover the entire population. But we also have regional register data with information about Umeå and Västerbotten. Then there are quality registers, which contain individualised data about specific diagnoses, such as diabetes. Register data are simply information that you get from public authorities and organisations, and usually about individuals, explains Karina Nilsson.
In her role as an SND domain specialist, Karina Nilsson and her colleague Anders Brändström contribute with expertise on register-based research on a national level. They are both part of the local research data group (DAU) at Umeå University, offering support to researchers in questions relating to research data management.
–When I was a geography researcher, I just happened to end up in a multidisciplinary collaboration with medical researchers and other social science researchers in Umeå, where we applied for funding to build a large infrastructure for register data that combines medical, socioeconomic, and demographic data. As I’ve been part of creating this infrastructure, and have worked with these data for a long time, it seemed only natural that I would also contribute as a domain specialist in this field.
Transparency and ethics are important when working on tax-funded register data
Karina Nilsson expresses that when you work with publicly funded register data you have certain obligations. She says that she is more and more aware of questions of openness and transparency in relation to research.
—When you work with this type of public data, which are everyone’s data, it’s incredibly important to actually look after them in a good way, and protect the faith that the public has for all of us researchers. There has to be openness and transparency, as far as it is possible with this sensitive personal information.
The fact that register data often contain sensitive personal information means that questions about openness are directly linked to research ethics.
—All researchers can order data that are held by public authorities by applying for permission to use them, so in that sense they’re already open. But if you work with sensitive information, you’re limited by the ethical approval you get. The data I use cannot leave our computer lab, which is protected by special security routines with certain access cards and no Internet connection. In that way, the data cannot be open. But we try to open them up by allowing researchers to come and work on site here.
The importance of the ethical aspects in relation to openness is something that Karina Nilsson talks quite a bit about when she meets doctoral students in her work. She thinks that in general, it is essential to try to reach researchers in the early stages of their careers and talk about questions about open data, and to inform them about the reasons behind things like FAIR and data management plans.
—We have to get better at telling researchers what open science really is. Whenever it comes up, researchers tend to think that it means that they’re required to share data, or that they have to publish with Open Access. We need to explain that there is a bigger picture here that we need to take into account. It’s about more than demands on individual researchers. The entire research community have to be custodians of the collected data, so that it’s possible to use them to their full potential when it comes to the number of studies, methodological development, and even for reviewing one another’s research. All for the greatest use to all of us.
The Domain Specialists arrange a webinar on register data and open access
For those who are interested in discussing questions related to register data and open access, there’s a golden opportunity on Thursday, 26 November when SND invites you to a webinar arranged by the domain specialists at Umeå University.
—If you’re interested in issues of principle in these matters, I want to recommend that you attend the webinar. It will be about the views on who owns data, and how you can share data. I think it’ll be really interesting. One of the presenters is the General Counsel for Statistics Sweden, Joachim Angermund, who will talk about how Statistics Sweden view data sharing, and about how you can access data from their MONA system. Björn Halleröd from the Swedish Research Council will present their vision of the future for register data. We will also discuss register data in relation to the FAIR data principles.
You can read more about the Register-based research and open access to research data webinar here.
Note that the webinar is held in Swedish, and the presentations uploaded after the event will also be in Swedish.
Read previous interviews in the A domain specialist in their own words series.