In Amsterdam, the pattern of disease slowly shifted in the nineteenth century: whereas people used to die more often from infectious diseases such as cholera or smallpox, by the end of the nineteenth century the cause of death was increasingly a degenerative disease, such as cancer or cardiovascular disease. But there were also major differences between rich and poor. Rich people lived longer and died more often from degenerative diseases. All this was revealed in earlier research by a fellow historian.
Research into causes of death between 1856 and 1950 with Citizen Science: residents of Haarlem, Zwolle, Nijmegen, Groningen, and Leeuwarden delve into their own city history
By gaining insight into causes of death in the 19th and 20th centuries, historians hope to learn more about how factors such as poverty or where you live affect your health. “But to be able to say anything about that, you need a lot of data and knowledge of the environment,” says researcher Tim Riswick. “That's why we work together with people from the cities we are researching.”
‘Amsterdam is, of course, just one city’, says Riswick. ‘We know that awareness of the importance of good hygiene and healthcare began in Amsterdam. But we don’t know whether people in the rest of the Netherlands died from the same diseases as in Amsterdam and whether there were the same differences between rich and poor.’ That is why he and his colleagues are now investigating the causes of death in Zwolle and Haarlem. Nijmegen, Groningen, and Leeuwarden will follow.
Riswick: "You can only make statements about disease patterns based on a large amount of data. That data is mainly found in cities, partly because their archives are often better organized. In villages, you often have to rely on death notices, which are notes stating the cause of death for each person. You can then link that information to birth, marriage, and death certificates. We are now trying to compile overviews of this for the whole of the Netherlands. But that is a huge task, for which we need a lot of people."
What do the ‘citizens’ do in this research?
We have a core team of about 100 people who regularly enter data. They do this via the platform hetvolk.org, where they view scans of registers from archives. They look at registers from 1865 onwards, because that was when it became mandatory to register causes of death. These registers are handwritten, so the citizen scientists actually decipher these sources and make them digitally accessible. They record information about the cause of death, but also about the person's occupation, the occupation of their parents, and where they lived.
But we also work with retired doctors. They ‘translate’ the medical terms from the registers for us. For example, you might come across the term ‘convulsions’. Nowadays, we associate convulsions with fever, but that has not always been the case. These former doctors determine what exactly was meant by such a medical term at a particular time. Sometimes they know this from their own experience, and sometimes they have to look it up themselves.
How do you find participants?
Mainly through hetvolk.org itself, but also through our newsletter and local media in the cities where we conduct research. We often organize lectures at the archives in these cities, which attract people who then decide to participate. Many people only log in to the platform once or participate for a week and then stop, but about ten percent of the group does most of the work: for example, they spend a few hours every week deciphering archive documents.'
What attracts participants to this project?
The ‘hard core’ often really enjoy being able to ‘puzzle’ for science. For some, it's nice to feel part of a group. We also meet in person once or twice a year at a gathering where we present the latest research findings. We often do this at a museum, where participants are given a tour and enjoy catering throughout the day. The latter is also important, as it shows that you truly appreciate people's efforts. Participants also receive a Christmas gift every year.
Why are citizens so important to this project, apart from the fact that you need a lot of people to sift through the data?
Participants ask a lot of questions and sometimes have knowledge that we don't have. For example, at one point in Zwolle, we came across a lot of deaths in a certain street. One of the volunteers then told us that there used to be a shelter for the sick in that street. City residents know the neighborhoods and situations in a city much better and sometimes come up with explanations that we would not have thought of ourselves. But it is also true that many hands make light work. Without those participants, the research in Amsterdam, for example, would have become a ten-year project.'
What advice would you give to researchers who also want to get involved in citizen science?
‘Take the time to prepare before you just put some data online and ask people to start working with it. You need to have a good plan, for example about how you are going to maintain contact with the participants and how much time you are going to spend on that. We did that with a newsletter, for example, and later with a blog post that came out every two weeks, where people could read about the research. Now we no longer have a permanent employee who can do that, and you immediately notice that it's harder to keep participants engaged."
Are you a researcher and would you like to know more about citizen science, or do you need help setting up a citizen science project? Please contact the Citizen Science Expertise Center at Radboud University.
Contact information
- Organizational unit
- Radboud Institute for Culture and History
- Theme
- History, Science