“What excited me the most today? Hearing the idea that applying self-collected health data for the greater good is a human right!” exclaims Gaston Remmers. He is co-founder and director of My Data/Our Health (MD|OG), a non-governmental organisation (NGO) that aims to give citizens power over their own data so they can be proactive in maintaining – or regaining – their health.
Article 27 of the Universal Declaration of Human Rights states: “Everyone has the right […] to share in scientific advancement and its benefits.” And indeed, in recent years millions of people suffering from chronic diseases have gone outside the clinical setting to apply their own personal health data to improve their quality of life. But what works for one person may not work for another: scientific research is still required to bring the loop back to the clinic.
Remmers is one of the organisers of the first ‘Cooperative Citizen Science Series’ meetup that took place at Amsterdam’s Science Park on 25 January 2019. The event’s leading question was: ‘What conditions should be met for you to share your self-collected health data for the common good?’.
Unfortunately, answering this question also means addressing a multitude of other questions: How will the data be collected, managed and shared? How do you turn this data into evidence to be used in research? How do you then loop any promising research results back into a clinical setting for the benefit of the patient? And, as the event’s presentations and breakout sessions made clear, these questions spark a whole plethora of sub-questions.
Fortunately, the event was not hijacked by an endless discussion on ethics and privacy – as is usual for public debates around the application of personal data. For this highly diverse cross-sector crowd, it was a given: the rights of patients come first. As for the daunting nature of the challenges ahead, the general attitude was highly optimistic: Bring it on!
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The event’s featured speaker was Gary Wolf. In 2008, together with fellow Wired magazine editor Kevin Kelly, he founded Quantified Self (QS) to bring together users and makers of self-tracking tools who seek ‘self-knowledge through numbers’. In recent years, QS has evolved from a niche group of hackers and health obsessives to a global support community of 10,000 active members that also seeks to upscale access to personal health data by working closely with public health experts, policymakers and research scientists.
The work of QS dovetails nicely with MD|OG and the other organisers of the event: Netherlands Organisation for Applied Scientific Research (TNO), Quantified Self Institute NL, Holland Health Data Cooperative (HDDC) and the Amsterdam Economic Board.
“The Netherlands is the perfect place for all these elements to come together,” explained Wolf. “There already seems to be strong connections between academia, the business world and government – in fact, today I did a presentation for the Minister of Health.”
Future editions of the monthly series will focus on more specific challenges such as ethical concerns, as well as how self-research is being applied to conditions such as cancer, epilepsy and cluster headaches. “The goal of this series is to bring as many interested parties together as possible. To build this small movement into a larger one,” says Remmers.
As Wolf puts it: “It’s really good news that people are solving their own health problems. There’s a small fire! So how do we help it spread?”
Mijn Data Onze Gezondheid, Amsterdam Economic Board, TNO, QS, HHDC