A website for citizen science

Within the lab New Technology we developĀ  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!

Ria and Lieke

Ria and Lieke are working together on projects within the TOPFIT Citizenlab focused on new technology. They are curious to find how researchers can best collaborate with citizens and other parties.

Citizen science and new technology: the researchers

January 17th – Ria and Lieke – Several projects have taken place within the New Technology lab since its inception. High time to introduce ourselves! Our names are Lieke Heesink and Ria Wolkorte. We have been working at the University of Twente, doing research within the TOPFIT Citizenlab consortium, since March 2020. Lieke does this from her background in psychology and neuroscience, Ria has a background in biomedical sciences and movement sciences. We both started this job because we think it’s very important that everyone can have a say in research. People often have a lot of knowledge about their own situation, and – in the case of people with a chronic condition – about their condition. We consider this knowledge to be very valuable and would like to use it in our research! The Citizenlab gives us the opportunity to cooperate with citizens and other important parties in our research, such as health care providers or companies.

The Citizenlab is a place where citizens work together with researchers on research in the field of health and well-being. There are several projects running, all focusing on different topics and sometimes taking different approaches. We focus mainly on developing and evaluating new technology that can support health and wellbeing. Our colleagues focus, for example, on prevention, living independently at home, the combination of work and informal care, and diabetes.

We would like to give you an insight into our work, which is why we will regularly post a blog about our work. In it, we will not only describe the results of our research, but also the process of research, the contacts we make in our work, and the courses or conferences we attend.

We are involved in various projects, but the common thread is that we collaborate with citizens – the co-researchers. And that we are engaged in developing and evaluating new technology. To give you a first impression, these are the projects we are mainly involved in or have been involved in. We will explain them in more detail in the coming months.

  • We have investigated what people with rheumatoid arthritis think of the HandScan, a new device developed by Demcon Hemics to monitor inflammation in the hand.
  • We are developing a citizen science website with people with rheumatoid arthritis. On this website, people can collect data themselves, in order to gain insight for themselves and to be able to share the data with scientists.
  • Together with people with rheumatoid arthritis, we are looking at what research they would like to do on this website, and what this research should look like.
  • With the Urimon research project, in which a new method for the early detection of cancer and cardiovascular diseases is being developed, we are together looking at how the participants in the research can play a greater role, by thinking along or cooperating with researchers.
  • With Wijkvoorziening ‘t Doesgoor, a voluntary organisation in Goor, we are working with students and the participants in the walking group to find out how technology can support the walking group in their ability to live together.
  • In addition to these content-related projects, we are also working on questions relating to ethics and privacy regarding the sharing of data, and ways of evaluating our own projects.

Besides the fact that these projects deliver great results in terms of content, we are also learning a lot about collaboration: how can we best design this, what works well for both citizens and researchers, and what do you need to bear in mind when working in such a way? All combined, we are building a Citizenlab of the future, in which we hope to be able to work together with citizens on better health and well-being for a long time to come!

Keep an eye on the website for the next blog!

Egbert Siebrand

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