Open Humans, what's next?
President Bartlet of The West Wing is calling his famous “What’s next” to his secretary after managing a task.
I just defended my PhD last week, and one question from virtually every person who attended and stayed for the after-party: What’s Next? Which initially felt a bit weird. After all, I already took my next step three months ago when I joined Open Humans as the Director of Research. But then I realized that this is a nice opportunity to reflect a bit on my first months and think about what my next goals for Open Humans are.
Where is Open Humans so far?
So far I spent good parts on learning the ropes. First of all, I had to find my way into the technical infrastructure of Open Humans. Learning the code base, the APIs, server setups and so on. And what better way to do this but starting my own projects? I thus integrated two new projects on Open Humans: First I connected my long-standing project openSNP with Open Humans – allowing users of both platforms to re-use their genetic data more easily. Then I started TwArχiv, which not only brings a new data source but also some data-visualization to Open Humans. This integration of Twitter data will hopefully also be a first step towards a more holistic view of personal data that includes non-medical data.
Hand in hand with the technical side of things I also found my way into the community around Open Humans. Learning which projects there are, how to best support them and also how to grow the Open Humans community even more. I not only got to know many of the brilliant individuals inside the Open Humans community, but I also helped them to achieve their goals - be it through bug fixes, relevant connections or finding out how to optimize our website to make it work for their needs. First steps towards a further community growth were also taken: We could announce the first three successful grant applications, all bringing new data sources to Open Humans. And a fourth grant announcement – enhancing existing data sets – will be out soon!
The Open Humans community grows nicely and is becoming more and more engaged. So things are on track. But where should we go from here? And what is the larger vision? Traditional academic research – as well as corporate data silos – put themselves into the center of all data collection. In contrast, Open Humans is very different to this. As Steph laid out in her blog post: Open Humans is a technological platform; a vibrant community; and a paradigm shift to how research is done at the same time. In addition to all these things there is one thing that I always mention when people ask me what Open Humans is: It is empowerment. Putting individuals in control of their own data and of research at large. And to me, this means more than ‘just’ giving people the choice of when and where to share their data.
What should Open Humans be?
Empowerment means giving people the opportunity and chance to explore and understand their own data. Be it on their own – or in collaboration as a community outside the traditional academic research setting. The growth of the independent Open Artificial Pancreas community – which aggregates their own data through Open Humans – is a stellar example for this empowerment. As stewards of the Open Humans ecosystem it is our responsibility to support people to run projects like these. It is up to us to make it easier to create and run projects on Open Humans – empowering more people including those who are not highly programming savvy. Open Humans offers the unique chance to democratize science, enabling people outside academia to do new research that has never existed before. To pull this off we have to become more inclusive in our approach. This means getting everybody on board who has great ideas for research.
First steps towards this direction have been made already: We now have a first data uploader template that allows everyone to create their own, data-collecting Open Humans project while requiring zero programming knowledge. Instead a web browser is enough to do the complete setup. A similar idea for the administration of projects should become a reality in the near future. Furthermore, we are on the way to create shareable analyses notebooks. These can be written and run by everyone – facilitating community-driven data analysis. By increasing our inclusivity more we will not only see more projects on Open Humans, we will also see a much wider diversity in how these projects will use data. I can’t wait to interact with all of them.
I see this diversity reflected in the kinds of data that will be on Open Humans and the kinds of research that will be done with it. Traditionally many of the projects on Open Humans have and had a focus on health. But I don’t see why this should be the sole kind of research that profits by being run with and by highly involved participants. After all, while much of the Quantified Self revolves around health, it is far from the only topic: People are interested in their personal finance data, phone usage, emails and more. And so are social scientists, economists and other academic disciplines. My goal is to get these people on board for Open Humans too, showing them the huge benefit that an engaged study population offers.
Let’s just think of a simple example: Everyone can pay Twitter to get access to their firehose of data or just scrape tweets for keywords from the web. But who but Open Humans can offer potential access to 200 or more full Twitter archives that are available right now? And more importantly, who offers the possibility to get in touch with these people and as such a way to get additional metadata and consent them? The same is true for virtually all kinds of social media data and many other data types. Humans are more than their bodies, and Open Humans should reflect this.
So this is what’s next for Open Humans: Creating an ecosystem that enables the largest possible number of people to do research; that collects and enables the re-use of the most diverse set of data; and that brings together participants and researchers from all disciplines and walks of life – informing each other and creating the most interesting research.