A website for citizen science
Within the lab New Technology we develop a website for citizen science, named Share Data Valley together with people with rheumatoid arthritis. This website allows people to collect data themselves, in order to gain insight into their own health. People can also share data with researchers so that it can be used for scientific research.
Interviews with people with arthritis showed that they would like to collaborate with researchers. A digital environment, such as a website, offers the opportunity to collaborate effectively on the collection of health data, according to a questionnaire and interviews.
First, we wanted to know what people wanted to be able to do on such a website and what requirements it had to meet. To this end, we submitted a questionnaire to more than 260 people with arthritis. We then discussed this in more depth in several digital group discussions with the co-researchers. In these discussions, we talked about the functions of the website, the design of the website, and about questions concerning privacy, data security and consent. We subsequently built a first simple version of the website. We reviewed this in one-on-one meetings with co-researchers, and the co-researchers indicated what they liked and didn’t like about the website.
Once the requirements for the website in terms of design and functions were clear, the researchers started talking to a number of parties who have experience with websites for collecting health data. This revealed that Sport Data Valley already offers many of the functions we were looking for in this project. On this platform, the safety of the data is well regulated. That’s why we decided to work together with Sport Data Valley for our website, Share Data Valley.
From Sport Data Valley to Share Data Valley
At this moment a first version of the website is being built by Sport Data Valley. The questionnaires specific for the research on arthritis will be added to the Sport Data Valley platform. There will also be a dashboard. This is a page with graphs on which a participant of the research can see his own data at a single glance.
The first version of the website will be tested and discussed with a number of co-researchers. This way, we ensure that everything works optimally as soon as we start the first study.
We have also created a webpage with all the explanations about Share Data Valley and the possibilities to contribute to the research. This will be launched soon, together with the first survey!
In this project we have worked closely together as researchers and co-researchers, and we have met frequently with the Sport Data Valley team. All meetings took place online, partly due to the Covid-19 pandemic. Fortunately, this went very well, but it did require adaptability from everyone. It seems that we have created a digital place together where we can work well and safely together on research.
You can read more about the process on our website. Or you can watch a short movie about the development of our website
In the future, we hope the website will be a place where people can decide for themselves which data they want to collect and in which studies they want to participate. We are not there yet. For now, we want to start with one study to find out if this way of working suits all participants. The first study will be about fatigue with arthritis. We will tell more about that research in our next blog!