I’m going to talk about something completely different, so I’m working at a research organization in the Netherlands, it’s called T&L and last year we started to do a project where the researchers are the subject. So you can say we do some science projects where the citizens are the scientists actually.
So I work in a group where we study metabolic health, so the people involved in this project are all nutritional researchers, so that’s what the plan was to start a cohort of the researchers can report using all Quantified Self devices and self-tests about yourself.
So how did we do that? So we first started with building a web application, an application that can catch all this different data. So we used APIs to couple activity measurements but people could also manually gather the data etc. So the whole project is about the participant who is joining this initiative and it’s called the Nutritional researcher Cohort, and they are in control. They can decide which data to share and which not. Also in the beginning we had a plan that people could actually to build their own study and ask people to join.
We started last year at the nutritional conference where we recruited people and then we also asked people to donate blood for using in bloodspots, so people really had to believe for this and get like fill more than 20 spots on blog spot. People also had to measure blood pressure, weight, glucose tolerance test etc. for reporting.
The first study started but people also had to do this continuously, so that was for the intake. Then we are then analyzing the data and especially the metabolize and measure over 200 metabolize in the blood, and people can now see at the website and can get back information about these measurements. For example fatty acids and they can also check how they compare to others in the cohort and where they are with these values.
Then the question is what did we learn from this project?
First of all initially we wanted to do genetics, so we’re doing the 23andme assay, but we couldn’t get that to the people who were thinking about the medical ethical decisions. We actually found out that the initial things we had we made a formal consent based on the legal consent that actually didn’t really cover very good in the end to publish our results. But we came to work around that, that we wanted to publish our results and have all the participants on the scientific paper. So we also learned that we had to be very careful with the medical ethical concerns.
The other thing that we learned was that a lot of people researched involved in this kind of research, that normally they are not the subject, so suddenly people had to give blood, and I remember one of the occasions that a professor demonstrate how you can do a finger prick and generate blood. But not for every person which is easy to do especially if you have low blood pressure. For her it was like, just do it like this and you now have blood.
And of course for me personally it had the biggest impact, because during this whole session I could see that my cholesterol levels for example. But also I did an advanced diabetes test, and it turned out I was in bad glucose tolerant so I could be pre-diabetic.
So it really affected my personal life and I started to change my food intake and my exercise.
We’re now in the phase that we evaluated the whole exercise and we want to continue. So we made a European effort with a big European group, we want to do a next study where we want to recruit 250 researchers for participate this and of course that’s the future to conquer the world and we want to make like a cohort where we can really measure a lot of people.
That will be great I think because then we can do really special stuff. We could like in the future measure health in a real time setting, and that would be very interesting like companies do. They do AB testing, so we could take a small portion of the people and ask them to have some sort of intervention and have another group as a control group. Then maybe in this way we could tweak our health.