What happens to data collected during a research project? Of course we handle them with care. However, a number of options remain. You can choose to use the data only for the research for which it was collected. You can also choose to share the data with other researchers, so that they can reuse it. But what do research participants think about this? And how do you ensure that people know what will happen to their data before they start research? We discussed this with people with arthritis, researchers, an ethicist and a data steward (someone who deals with the proper storage and processing of data).

You can find the detailed results of the group conversations here.

An interview with Michelle and Ria on this topic can be found here.