Bear with me.
During the Protestant Reformation, the Bible was translated from church latin into vernacular, and printed for distribution. Suddenly, people outside the Catholic Church could interpret their religious writings for themselves. The result was a massive forking of paths as people all over experimented (and continue to do) with their own version of best practices from the Bible. The Catholic Church still exists, but it is no longer a monopoly on Bible-related information.
The Information Reformation is similar in structure and importance. Wearable devices, digital wakes, and online communities mean that for the first time, large numbers of people outside the medical professions have access to their own physiology, and can document what happens to them; bodies are being put into the vernacular for all to read and interpret.
Many of the analyses I publish are done to create precedent within the academic record. Rather than claiming to have discovered something in a colonial sense, I aim to go through the hassle of publishing from within an institution so that patterns others have already seen and shown me can be more broadly recognized. Lots of people are making important discoveries all the time through clever use of self tracking or community engagement. I celebrate this participation - in fact it is critical to reaching unmet needs, including understanding underrepresented diversity and different outcomes in women's health.
When more people get involved generating data and sharing stories and experiences, two good things happen:
1) Discovery is more democratic, and less colonial. By that I mean it's not just up to me as a professor to decide what we learn; more and more people are able to find a voice and shape the scientific narrative, thanks to efforts to distribute free tools and share data.
2) The surface area for discovery expands. Think of a bubble containing all scientific knowledge, suspended in the universe of knowable things. Knowledge gets from the outside to the inside through scientific research, and right now, that's mostly limited to a small number of highly-trained professional scientists, like me. We make a little pore in that bubble, through which knowledge is allowed to flow inward. As we activate more and more people to contribute through other means than traditional academic training (thank you robots for taking my job and empowering others) then we expand the surface area through which knowledge can flow inward, meaning more knowledge can come through into our bubble per unit time.
Together, these two things give us the potential to accelerate the rate of discovery, and to make sure that discovery covers more people and more experiences than it currently can. Lots of good can come from that, and it's the opportunity the Information Reformation represents.
But, there are many interesting issues to address to make this a positive thing - privacy, inclusion and bias, data ownership, data exploitation, consent and coercion in participatory research; these are just a few of the most obvious issues that can also cause harm. Some already are doing so. If we're to maximize the good from the potential of this time in history, we need to address not just the data engineering challenges, but the social ones as well. The social challenges are much harder than the scientific and engineering ones, and they take many more people and communities to function.
I'm privileged to use my position at UCSD to promote N=1 and community-generated stories told with data. For my work, I tend to focus on women's health, the Lyme community, and identifying sources of evidence for or against the use of alternative medicines.
I also work with HBCUs and MSIs around the country to try and develop tools that make data science capabilities free and intuitive for faculty and administrators, so that they find it easier to share with their student bodies. I am open to collaborations, discussions, and talks if you or your community are interested in engaging, though you certainly don't need me to do so. I am excited to encourage student & capstone projects as well.
If you're interested in personal or community data stories, you might enjoy these other organizations, made by wonderful people trying to explore this frontier and share.