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Every day is a clinical test
Citizen science is becoming a huge thing in the field of medicine – Anna Charko from the Copernicus Science Centre talks about it with Paweł Szczęsny, PhD, biologist from the Institute of Biochemistry and Biophysics of the Polish Academy of Sciences, chairman of the Open Science Foundation, and co-creator of the Polish exhibit in the Sparks exhibition.
Paweł Szczęsny: Citizen science isn’t a recent phenomenon. Actually, it’s over 100 years old. The end of 19th century saw scientists turn to wider society and ask: ‘Help us analyse sea currents’ or ‘Help us count the stars’. In Poland, we don’t have many of such projects, but we actively participate in international projects.
Does the force of citizen science lie in the number of people involved?
Yes, but also in the freshness of ideas. I’ll give you an example: A few years ago, Tim Gowers, who received the Fields Medal – a Nobel Prize in maths – posted on his blog: “I am working on a problem which will take me 6 months to solve. Maybe you would like to help me?”. Over 30 people joined him, half of them without any formal academic qualifications. There were students but also a maths teacher from a high school in the USA. Together they managed to solve the problem in about a month. The number of participants does not make it all – fresh ideas and outsiders’ perspectives are also important.
And the fact that scientists have blogs.
Yes, of course the Internet helps.
Coming back to medicine.
There, citizen science jumps from 1-2 million to 100-200 million participants. It begins with patient groups: people who are waiting a very long time for a therapy or to access certain information gather and share what they know. A few years ago, the distinction between being interested in research and becoming part of it was crossed thanks to the Sage Bionetworks organisation, which has its own platform for the so-called ‘open science’. They asked people from all over the world to join the research on the mechanisms of development of a particular type of cancer. It wasn’t a classic research project – apart from finding out more about cancer, its aim was also to improve treatment mechanisms.
This ‘Every day is a clinical trial’ model is inevitably the future direction of citizen science. I believe everybody will be willing to join this movement of gathering huge amounts of our health data so that our doctor can follow our health trajectory and find what might have made us sick. not only does this type of information help the diagnosis but also impacts the decision concerning further treatment.
What do you think about health hackers – people who test new solutions for personal use in order to increase patients’ comfort of living? How can this translate into the public interest?
I would consider this issue on two levels. On the one hand, I can understand why the medical community expresses concern about such initiatives because, to be honest, it creates a great ‘opportunity’ for people who want to take advantage of other people’s health concerns and abuse them financially.
On the other hand, you have for example Tim Omer, suffering from diabetes who hacked the insulin pump. He did it on his own, at his own risk, and in a way committed his life to his invention.
Here comes the second level I was mentioning. I don’t know about doctors, but as a biologist, am very happy about it. These experiments go beyond any rules or regulations on human experiments, yet they yield fantastic information on how the human body works. No ethical committee responsible for approving clinical trials involving human health and life will ever allow such experiments. At the same time, nobody will loudly reprove people like Tim Omer. After all, there has always been people experimenting on themselves in science history.
The most famous experiment involved swallowing helicobacter pylori to prove that gastric ulcers were caused by bacteria.
There were also many physicists, biologists, etc. The scientific community has quite a sentiment for the courage of scientists who put their health and life at stake trying to find out more about the surrounding world.
Now I see what you mean by saying that this is the future. The future of science depends on taking a step into the unknown – and these citizen scientists are taking it.
I wouldn’t like to see the whole burden of progress put on their shoulders. We will be able to move medicine forward if we manage to monitor (on the long-term) the health condition of a person who isn’t a patient yet. Because observing the illness development trajectory, e.g. diabetes, will allow us to understand numerous mechanisms that result in certain health effects – and actively prevent them.
We’ve mentioned personalised medicine. What if we have a patient, who comes to the doctor and presents different graphs from various applications illustrating his/her condition over the years? The doctor would also have to be properly trained to understand it. So how about the diagnosis?
To a large extent, diagnosis will split up from treatment and taken away from doctors. I’ll give you a simple example from my backyard – genetic testing. The sequencing of the human genome, which now costs about 5-10 thousand dollars, gives patients information about their genome in about 3 billion letters. Obviously, no doctor can read that. What we need here is not a doctor but a computer lab. Patients will then need doctors to interpret the results. I think that, sooner or later, before doctors see their patients, they will already know everything about them from synthetic indicators shown on one A4 sheet.
It all sounds a bit scary to me and I can see one more difficulty: patients will have to cooperate even more. It won’t be enough to just write down your symptoms and go to the doctor. You’ll have to regularly note down pretty much everything: I sweat in the morning, I feel sick after eating a carrot… All this data will have to be systematically saved in applications. Maybe we’ll have to wear sensors, etc.
Exactly! This is the future. Apart from people involved in the quantified-self movement, who spend hours every day writing down all the information you mentioned, nobody would bother doing that if it wouldn’t be useful the next week or month but in 5 or 25 years. It’s only a matter of time when sensors become so tiny that we will be able to wear them 24/7 without any discomfort. Today people say that ‘It’s scary to think about those sensors, it’s like Big Brother is watching me’. But the truth is that legal regulations are already preparing us for that, for instance the EU is introducing regulations on sensitive data. And I’m quite sure that in the end the profit and loss balance will turn out to be beneficial for the patient.
In 2050, the average life expectancy will be 89 years. In consequence, the quality of life will matter, not its length. Nobody wants to spend their last 30 years bedridden. We want to extend the time of being fully capable to communicate with family and friends. This will be the most convincing factor in this case.
You’re saying that this will be the biggest motivator for people to get involved in citizen-scientific activities?
Yes, that’s it.
How is your research impacted by the power of citizens’ involvement?
One of my projects concerns predicting the risk of sudden death in new-borns for unknown reasons, also known as ‘Crib death’. Scientists have already performed preliminary animal testing and I think we’ve discovered the mechanism behind Crib death. We also have an idea of how to predict such risk with an electrode that would be attached to the baby’s tummy where his nappy is, and monitor the diaphragm activity during sleep. We’re able to perform in-hospital clinical trials on most at-risk children (babies with low birthweight) but with maybe 100 children and that’s a very low number. We would maybe be able to prove that there aren’t many false alarms (a huge problem with all such devices is that parents are often alarmed for a non-existent threat). However, we won’t be able to check if they don’t alert too rarely. For this we need to perform the same clinical trial on 100,000 babies. We can do so in two ways: one would be by establishing an international consortium, asking for some EU funds and get results 5 years later. But there’s also a second way: informing all parents in Europe about the trial and telling them that they can buy this research device – because we can’t fund 100,000 devices.
How much will that cost?
About €100. If you want, you can join the research and we will do everything we can to let you know if something potentially bad happens. Then, after we collect the data, we’ll turn to parents and say: ‘Listen, those of you dealing with statistics, programming, etc. can help us work on these results. This way it will take us 2 months instead of 2 years’. It’s a very realistic scenario, provided I find funds to kick-start it on such a large scale. Here, of course, we can’t count on public financing because funds allocated to science and research have to be spent set purposes and not on supporting communication with participants of a clinical trial. For this reason, the Institute of Biochemistry and Biophysics of the Polish Academy of Sciences has established the Open Science Foundation, which I chair. We are currently building the technical and financial infrastructure for this kind of projects. It brings us back to where we started our discussion because the primary idea behind such a platform is to enable everyone to start their research project.
By saying ‘everyone’ you mean every scientist or simply everyone?
Everyone. I can’t imagine a situation where the author’s background would be an element of their idea’s quality assessment. After all, at a later stage anyone can get involved in the implementation of the project, including scientists.
Great. It seems like science would really become open for a big and diverse crowd of patients.
Yes. The media worldwide are very eager to promote stories like ’13-year-old boy find cure for cancer!’. Let’s make it more common: many people around the world have great ideas. Some of those ideas are unrealistic now, some simply impossible to make. But you don’t have to be a 13-year-old genius to push science forward. I’ve observed – and that’s why I often try to reach outside the academic world –that the scientific community very often falls for this ‘mutual appreciation’. We begin to repeat the same ideas over and over again. We lack the freshness of an outsider’s look. This is why I haven’t been able to spend a long time focusing on one particular research area. I started my career in structural biology, then moved to genomics, and now I’m focused on human physiology. In the past I saw repeatedly that after 3, 4, 5 new ideas, there was no fresh perspective which for me was like a signal that I had to immediately change my research area.
You could have probably just posted ‘I’m looking for fresh, new ideas!’ on Facebook…
Yes, for example. What we are missing is the outsider’s perspective, a voice from someone who would sometimes ask a seemingly absurd question that would actually make us realise something completely new. I’m sure that such interactions with a wider audience would be for the benefit of all. Citizen science is the future for all – the academic community and the whole society.