Health data's adolescence
March 5, 2014 By Susannah Fox 8 Comments
I wrote a guest post for the Health Data Consortium — here's the start of it:
This year marks the 25th anniversary of Sir Tim Berners-Lee's proposal to create what we now call the Web, the visual, hypertext organizing system which overlays the internet. The pace of internet adoption gathered speed once people could more intuitively point, click, and follow a train of thought without having to type in a chain of commands. I see a clear parallel in the adoption of tools related to health data, most of which are still inelegant, but show growing promise as they become more visual, collaborative, and intuitive.
Remember: In 1990, only 42% of U.S. adults used a computer, even occasionally, compared with 81% who do so now. In 1995, two years after the release of Mosaic, the first browser, the Pew Research Center found that 14% of U.S. adults said they used the internet, compared with 87% today.
Open health data is no longer at the toddler stage, when the need for public data sets or related tools had to be explained. It is also not yet mature, nor considered a given in society, like the Web is today. Health data is instead in its adolescence, like the Web was around 1996 – just starting to become beautiful and truly useful to the general public, pushed forward by a growing group of innovators, with a mix of corporate, government, and non-profit support.
We should look at these developments with kind and hopeful eyes. What is the blink element of today that we will laugh at later? What is the Mosaic, the program that allows regular folks to jump in and start clicking? What is the AskJeeves and what is the Google of health data? What is the Compuserve and what is the AOL? What is the Blackberry and what is the iPhone?
My advice is to learn from the past. Follow the artists, the geeks, and those who play with the tools and data sets at their disposal… (continue reading the post, including the comments)
Note: If you are interested in health data, register now for the Health Datapalooza, to be held June 1-3, 2014, in Washington, DC. See you there!
Filed Under: internet geology, positive patterns Tagged With: Blue Button, Health Datapalooza, Katie McCurdy, Pew Research Center, ProPublica, Quantified Self, RunKeeper, Tracking for Health
Gilles Frydman says
Thank you, Susannah, as always!
One immediate comment: if we have reached adolescence, why are we still treated like we belong to the kindergarten? While our world has evolved dramatically since the 90s and has even become mature in some segments, many of the comments that HC professionals make about networked patients are the same we heard in the mid-90s, and they keep focusing on the dangers of access to information that is either of bad quality of too complicated for us, poor kindergartners.
This insistence on making sure the paternalistic views remain the same, regardless of evolving realities is the most powerful symptom of the system inertia. I find it fascinating.
Susannah Fox says
I wrote this post thinking of my own experience as an adolescent and I think your point makes perfect sense:
Health data aficionados, headstrong & confident, want to be taken seriously. They feel they have earned it (and most people would agree). Clinicians (in your view) aren't ready and refuse to acknowledge their importance, playing the role of the adults who talk over an adolescent at the dinner table.
So: what happens next? Do the rebellious teens take matters into their own hands? How do they convince people to see them as peers?
I missed your response….
Upon reflection, I think we were adolescents in the 90s, when we created the new peer networks allowing patients to learn from others who had been or were facing similar medical issues. We are now adults and cannot understand why anyone would deny the clear value these peer networks offer to the entire medical world. This is no longer a question of being rebelious. It's a question of promoting good science. As Graham Steel, one of the great UK advocates for connected/networked science wrote yesterday, "Science is fundamentally a peer-to-peer process and online communities will shape the evolution of scholarly publishing". Besides being an extremely interesting blog post, the title perfectly summarizes the real impact of good patient online communities.
Gilles, I'm beginning to think of you as the cool exchange student who arrives in Small Town, USA, and lets the other kids know that there is a world out there where teens are allowed to drink wine with dinner and go dancing in the clubs. You are ahead of the mainstream, that's for sure.
John Sharp says
I agree that we are in our awkward adolescent stage. We have matured to a state of having the basics down but maybe are expected to grow up too fast with the strong consumer demand for Google and Apple-like apps and not Mosiac.
I remember Mosiac well – helped people download it and taught them to surf!
Thanks, John! You might enjoy this collection of tweets I pulled together — responses to the Pew Research Center's "Web at 25" report:
http://storify.com/SusannahFox/the-web-at-25-in-the-u-s
I love people who are honest about how they just didn't get it, like Nicholas Christakis who wrote: "1995 at UChicago: friend set up Mosaic for me & said it was for 'the graphical part of internet' and i asked why i needed that"
Another gem: Julian Guitron, MD, who wrote, "I remember my first ever connection through FTP to Cornell. Felt like landing on the moon!"
If you see examples of health data developments that illustrate this stage, please post them here!
Gary Thompson says
Like Julian Guitron, I, too, flashed back to some early experiences connecting to the Internet, other people and other places. I flesh out that thinking in a post I made inspired by your post Susannah, What's the Next Mosaic Moment for the Internet?
http://theendoflinearity.com/what-is-the-next-mosaic-moment/
An excerpt is appropriate here:
Yes, one can download myriad Facebooks apps from Apple's App Store or Google's Play, but those are just different interfaces to the same stuff, a step beyond HTML, but still wrapped around the concept of "chartopomorphism." Chartopomorphism is a term I coined in my View from the CLOUD a year ago for paper-based thinking (inspired by another one of your posts)! Just like anthropomorphism attributes human characteristics to inanimate objects, chartopomorphism attributes paper characteristics to digital tools. Electronic health records are a prime example of this in the medical field. We've spent $20B moving data from papyrus on clipboards to silicon on glass screens but haven't changed the paradigm.
Beautiful. Chartopomorphism. Boy, do we suffer from it!