Collecting GPS data from the elderly: research-related security issues addressed
|Datum:||15 mei 2019|
|Auteur:||Data Federation Hub (DFH)|
More and more elderly people are still living at home. For some, it is a choice. For others, it is because society has chosen to reduce the number of places available in residential facilities for the elderly. Living at home can be quite a challenge for older people with memory issues. To make decisions on appropriate housing options for this target group, more information than is currently available is needed on how they navigate their living environment. Prof. Louise Meijering of the University of Groningen’s Faculty of Spatial Sciences is conducting a study designed to help fill this knowledge gap. Her data-gathering methods include mobile interviews, interviews with carers and GPS tracking. The use of GPS technology to monitor the movements of older people with memory issues is clearly a highly attractive option, but given that the data collected is personal, it must be treated securely.
What is your approach?
“We always start by studying people’s living environments, usually by asking older people with memory issues to tell us about their experiences. What is new about this study is that as well as asking questions and keeping activity diaries, we are also using GPS trackers. The combination of these methods generates a more complete picture of people’s living environments. We can track the physical and local component, in other words how people get around (e.g. on foot or by bike) – and whether what participants tell us tallies up with the GPS data. We also take note of what they encounter en route, such as green spaces, obstacles, pavements and cycle paths. And we study their social network. The GPS data provides us with extremely detailed information about people’s movements. For example, it might reveal that the route they take when walking to the shops varies. And the explanation may be simple – it could simply depend on the weather.”
Are elderly people happy to participate?
“It can be quite difficult to get elderly people to participate and to wear a GPS tracker. Some older people don’t trust technology.”
Who is involved?
“This is an international study. We are working together with universities in Canada and Sweden. The Canadians’ particular interest lies in the medical decision-making side of things, whilst the Swedes’ approach is based on their academic vision on nursing. Our main focus is on the health geography aspects. We have 20 subjects from each of the three countries participating in the study.”
How are subjects’ personal data kept secure?
“The GPS part of the study generates lots of data that can easily be traced back to individuals. At first, we used the Y drive (where UG colleagues can share research data), but then I attended a presentation by Sander Liemberg (CIT) on the Virtual Research Workspace (VRW). It sounded like an ideal tool to use when working with secure data, so I got in touch with them straight away. The VRW is a virtualized desktop environment where researchers from the UG and the UMCG can perform data analyses jointly and securely.”
“In our case, it is also handy that the VRW allows us to share data securely with researchers around the globe. You can assign people roles, which means you can determine who is allowed to do what within the secure environment. The analyses, and hence the GPS data that can be traced back to participants, stay within the VRW.”
Did you draw up a Data Management Plan?
“Our funder, ZonMW, wanted us to draw up a Data Management Plan. I did so with the help of Cristina Montagner from the Research Data Office and Esther Hoorn from Legal Affairs. They also helped me to draw up an informed consent form that meets the new privacy legislation requirements.”
What support did you receive from within the University of Groningen?
“It is great that there is so much support available to researchers within the UG. Their expertise helps you forward, especially if you are working together with external parties, as we are.
All of the new legislation creates challenges, but also opportunities. I would like to conduct a Data Protection Impact Assessment (DPIA), but it is proving difficult to convince the Canadians. Their legislation is so different from ours.”
What is the ultimate goal?
“The ultimate aim of this study is to make it possible for older people with memory issues to keep living at home for longer. Our thorough analysis of their living environment will enable us to formulate recommendations on how to facilitate the achievement of this goal.”