blogs en – Topfit Citizenlab

Students and citizen science

April 8th, 2022 – We – Ria and Lieke – work within the New Technology lab of the TOPFIT Citizenlab. We are both employees of the University of Twente. As such, we think it is important to give students the opportunity to do research as well. In the past few months, we have done that by having students from the university work on a project, which also involved close cooperation with citizens. The students came from different studies and worked together in a project team of six students on a challenge from society.

In this case, the challenge came from Wijkvoorziening ‘t Doesgoor. They organise various activities in Goor with the aim of connecting young and old and contributing to the welfare of people in Goor. One of the activities they organise is a walking group. Twice a week, residents of Goor can walk in a group, accompanied by a physiotherapist. Afterwards, coffee is ready for those who feel like it. Although ‘t Doesgoor already makes a very good contribution to society, the organisation is very open to new ideas and suggestions. The walking group, for example, wondered whether there might be (technological) opportunities to support them.

The students devoted themselves to this question. By walking along with the group and asking questions at the same time, they were able to get a clear picture of the questions that the group of walkers had. Based on this, the students came up with ideas, which were then discussed with the walkers. In the end the walkers and the students together came up with possibilities that could strengthen the group. Two issues and corresponding recommendations came out of this project. Firstly, the walkers wanted to make the walking group more widely known. The suggestion was made to place an announcement in local newspapers. Secondly, the question was whether there could be a possibility of walking outside Goor, so that there would be more variety in the routes. Since people did not want to spend too much time travelling, the suggestion was made that the group could go walking in other municipalities in Twente. Because the students only had 10 weeks for the assignment, it was not possible to put the ideas into practice yet, but both ideas are now being considered within ‘t Doesgoor, among others as part of a new student project.

You may have noticed that the solutions in this project do not require (new) technology. Although within the TOPFIT Citizenlab we mainly focus on improving health and well-being by means of technology, we can of course never predict in advance what the desired solutions will be. We see technology as a means to an end, not as an end in itself.

All in all, it is great fun to challenge students by getting them to work on a project in concrete terms. The questions they ask and the creative ideas they come up with are always inspiring for us. By allowing the students to work on social issues, we also ensure that, outside the university, more is known about the work of the university and the possible contribution of the university to questions from citizens. If you have a question that students can sink their teeth into, let us know!

Working and learning together

March 3rd, 2022 – We – Ria and Lieke – work within the New Technology lab of TOPFIT Citizenlab. Within our projects we work closely together with citizens (see also our previous blog). Besides the cooperation with citizens, we also have a lot of contact with colleagues. There are always colleagues to collaborate with or to learn from. Of course, we have regular consultations with each other, we speak to each other almost every day. We work together on the projects that are going on right now, and we decide who will take on which tasks. This is mainly done digitally, as we all work from home due to the corona pandemic.

In addition, we have monthly meetings with other researchers in the New Technology lab. During these meetings, we discuss the progress made and jointly consider subjects that require extra attention. For example, about what the next step in the research should be, whether we want to submit a contribution to a certain conference, or which subsidies we might apply for. Grants help to finance new research.

We also have weekly meetings with other researchers within the Citizenlab. These colleagues, working at the University of Twente, Saxion Hogeschool and ROC Twente, are all engaged in citizen science. Some work in their project with people with diabetes, others with informal caregivers, and still others with elderly people or the general population. Everyone has a different background, such as psychology, movement sciences, physiotherapy, philosophy, health sciences and design thinking. At our weekly meetings, we keep each other informed of progress in the various projects, and celebrate our successes. An important part of these meetings is also to discuss issues that we encounter, so that we can learn from each other. Sometimes we focus on one problem that someone brings up, which we then all think about together to find a solution. For example, how to design meetings online. Or about where we see opportunities for starting new research. In addition, we sometimes choose to discuss one project extensively, so that we can all learn from what went well and what did not.

In the Citizenlab, we are all busy thinking about how citizen science can best be used for research into health and welfare. Of course, we can learn a lot about this from the work of others. That is why we also organise a reading club once a month. For this, we read a scientific article that someone found interesting beforehand. We then discuss this article together. One time, the article is about ways to safely collect data within projects; another time it is about the best ways to collaborate as researchers and citizens. And yet another time it is about working in a team with people from different backgrounds. The topics are very diverse, but all important for citizen science. Because we spend an hour discussing the topic of the article, we immediately think about how we can improve our own projects. This way, we stay up to date on of the latest developments and learn something new all the time!

These meetings all help to ensure that the projects run smoothly and that we make use of each other’s knowledge. Fortunately, there is often room for a pleasant chat, because that is also important in these times of working from home!

Creating a research protocol together

February 15th, 2022 – Ria en Lieke -As we mentioned in the previous blog, in the New Technology lab we have created Share Data Valley together with co-researchers with arthritis. This is a website where we can collect data for research. Simultaneously with the development of the website, we also decided together with the co-researchers what we want to research on the website, and what this research should look like.

We did this by first collecting possible topics through conversations with a number of people with arthritis. This list was supplemented with topics that we came across in scientific literature. We then presented this whole list to a large group of people with arthritis by means of a questionnaire. Many topics emerged, but fatigue was mentioned the most. We continued by discussing in a group discussion what questions people have about fatigue. It turned out that fatigue is mainly experienced as very unpredictable. The co-researchers said that it was often difficult to predict the level of fatigue, and that it would be nice to have a better understanding of the factors that influence the experienced fatigue.

The co-researchers provided a lot of information. We also spoke with a rheumatologist who provided additional insights based on his own knowledge. We further read through the scientific literature on what is already known about fatigue from previous studies. Based on all this information, we wrote a first draft of a research proposal.

In this proposal, we wrote which information we wanted to collect, how we wanted to collect it and for how long we wanted to collect it. We then discussed this proposal with 24 co-researchers in several group discussions. They indicated what they thought was good, what they thought could be left out of the study and what information they were missing. They also mentioned good alternatives or additions to the proposal. These discussions enabled us to produce a complete study, of good quality, which we hope will be workable for the participants.

It was nice to see that all parties used their own knowledge and expertise in this cooperation. The co-researchers clearly identified the most important questions they wanted to know the answers to and, thanks to their knowledge of rheumatism, were able to make it very clear what information needed to be collected. They have also ensured that participation in the study is easy and that the burden is not too great for the participants. We as researchers have ensured that the study is of good quality and based on the latest scientific insights.

Soon we will start the study, in which people with arthritis will fill in a short questionnaire (2 minutes) for 3 weeks on the phone, tablet or computer. With this study we want to gain more knowledge about fatigue and factors that are associated with fatigue. In particular, we will pay attention to the differences from one day to the next. Because participants can directly view their own data on Share Data Valley, they can see for themselves how their fatigue – and other data such as pain and stress – changes from day to day. Thus, we hope that both researchers and participants will benefit from this study.

The study will start soon, and we hope that as many people as possible will want to participate! Keep an eye on our website: www.topfitcitizenlab.nl/reuma-en.

A website for citizen science

January 26th, 2022 – 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!

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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