I am struck, once again, by the power of data and the power of one.
Carlos Rizo, Chief Imagineer of the Health Strategy Innovation Cell, posted this very intriguing tweet on May 2:
The power of open data: To find problems in complicated environments, and possibly even to prevent them from emerging.
Clicking through, I saw it was a quote from this eye-popping post: Case Study: How Open data saved Canada $3.2 Billion. The writer, David Eaves, concludes (emphasis added):
When data is made readily available in machine readable formats, more eyes can look at it. This means that someone on the ground, in the community (like, say, Toronto) who knows the sector, is more likely to spot something a public servant in another city might not see because they don’t have the right context or bandwidth.
Where have we heard that before? How about every e-patient story, um, ever? Or, as Regina Holliday recently testified, “I may not be an expert at my husband’s disease, but I am an expert when it comes to my husband.” That’s the power of one person, to care so much about someone that they will read his entire medical record.
If someone is motivated enough to dig, interested enough to analyze, and knowledgeable enough about their chosen topic to see data with fresh eyes, they can start a revolution on a small scale (like preventing medical error for a loved one) or on a large scale (like exposing widespread corruption).
The Pew Internet Project recently released an in-depth look at Government Online in which we found that 40% of U.S. internet users (age 18+) have gone online for raw data about government spending and activities. (Note that we released the data set, too.)
Some say this is just the beginning, which is why we conducted the survey, hoping to pick the topic while it’s ripening. Others say there’s a limit to the number of people who will ever want to crunch data. See, for example, Adam Bosworth’s recent speech, in which he says most Americans don’t want data per se, but want to know how it fits in to their lives.
Now comes the Design for America contest, being run in conjunction with the Gov 2.0 Expo and in celebration of the U.S. Open Government Initiative. (Full disclosure: I am on the Expo’s program committee and hope that it will be, like last year, a one-stop shop for cross-disciplinary inspiration.)
On the front burner for all those reading this blog, of course, is the Community Health Data Initiative from HHS.
Now, HHS did not receive a perfect score from a citizen group evaluating its open government plan, but it is attracting talent, namely Ted Eytan and Regina Holliday. Check out their plan for unlocking hospital data together and think about how you can throw some logs on the data fire.
Also, think about attending – or at least following updates from – some of the public service/data geek conferences coming up this spring:Â Gov 2.0 Expo (May 25-27); Personal Democracy Forum (June 3-4); Health 2.0 Goes To Washington (June 7). These are just the three that I know about: What other meetings fit this description? Where else is the data revolution taking place?
Susannah,
A (quick) point. If we put together the quote:
“When data is made readily available in machine readable formats, more eyes can look at it.”
Plus, a recent tweet (http://twitter.com/SusannahFox/status/13374389099) by yourself saying:
“And as I just wrote to a reporter, I do not endorse the methodologies or findings of non-@PewResearch studies I tweet #disclaimer”
This is more than just data. You know that. Sharing and “opening out” data assumes perfect methodology, every time. My colleagues have looked at the hidden dangers of mixing clinical data across systems due to mis-understanding of measurements, techniques of elicitation and other factors. This is particularly the case in pathology where if results are entered incorrectly they can propagate at an amazing rate. So too can errors made in the coding of information.
I guess, in short, making data open is a lot more than just the data itself but about the complex processes involved and the context in which each data item is placed. Meta-data, perhaps, but also semantic data detailing the lifecycle of that data.
Anyway.
Yes to all that!
Notice that I call out the power of one person to read one medical record and spot errors, NOT the power of aggregation of medical records or the power of porting in various data sources to a medical record (I think @epatientdave has a story about that :)
What I also didn’t write about is the disappointment that some people feel when they finally get a look at the data that has been made available (check the comments on Ted Eytan’s post, for example, where two women’s health experts point out that Medicare data is not so useful when it comes to labor & delivery).
What’s that phrase about how a journey of a thousand miles begins with one step?
Keep the critiques coming, though – I want to hear more about what people really think.
Thank you, Susannah.
I shall check out those posts. I guess the medical record is comprised of a number of data sources from multiple organisations so you could find the data quality issues.
I’m still wrapping my head around the scale of this and trying to come up with parallels with initiatives in the UK.
I will keep digging.
Thanks for the clarification. I completely agree that patients should be able to access their records if they wish. To me this is not about open data, but about the good sense of making the story and information that is contained in notes, and which patients already have an absolute right to access, as easy as possible to access.
Open, aggregated data, as Mark points out is a whole different ball game.
One of the primary findings of the Pew Internet Project’s research is that the internet is changing people’s relationship with information, which is changing their relationship with institutions.
This post is about the way an individual can connect that shift to their own life (such as viewing your complete medical record, whether it is electronic or not) and how an institution can connect that shift to their work (such as the U.S. gov’t inviting citizens to work with data that has previously been difficult to access, not out of the goodness of their hearts but b/c they hope to discover new things).
There are, of course, two different “ball games” as you write, but isn’t it amazing to watch them being played in parallel? That’s what I’m about – noticing the patterns.
RT @jourpm: Power of Data & the Power of One http://is.gd/bVDSR Can individuals be center of Gov 2.0? http://bit.ly/c7ODy7 #opendata #modgov
Susannah interesting post and also like the contribution that Mark has made. Clearly in the coming years there will be further inputs made to data sets with the rise of mobile applications. Having worked with this type of mass data I know that we need to consider some boundaries or constraints on how these data should or could be used. I’m fine about calling conclusions from retrospective databases hypothesis generating but urge that we don’t fall too much into claiming falsehoods? Oh and the development of patient apps that they (or should I say we) can use.
Thanks for those points about mass data – and the reminder that mobile is going to have a significant effect on this sector, too.
Susannah – this is such a great topic. Thumbing through the HHS Open Government Plan (available at http://www.hhs.gov/open/) you can see that this is an effort HHS is taking very seriously. The agency recognizes that there is a profound difference between data and information and is working to find venues (including the Gov 2.0 efforts) where private sector and non-profits will choose to engage to add value to the data. Think about NOAA and all of the commercial applications of their data that were enabled. Looking at the CHDI datasets as a transparency advocate, I’m glad one person can look at it – but I’m encouraged that many organizations can use parts of it to improve and expand the services they provide.
Everyone: Ted was one of the reviewers of the HHS open government plan, which I link to above.
He’s going to lead a DCWEEK session on June 16 called “The Data We’ve All Left Behind: Uncovering The Social Media Data Trail” — definitely another public service/data geek meet-up to add to your schedule if you live near or plan to visit DC that week:
http://schedule.digitalcapitalweek.org/
Yes, these two are the same point — at the population and individual levels. Thanks for connecting these dots. Get the right data in the right hands, and the right things can happen.
I re-learned from an esteemed colleague this week a very important lesson about openness. He said that we need to stop using computers as mere typewriters and instead, use them understand and satisfy the requests of people and machines to use Web content more effectively. With #opendata more knowledge/wisdom will be available to those who needed it the most.
In the spirit of cross-disciplinary inspiration, there has been a parallel stream of conversation happening in the philanthropy world, where there is a growing level of energy around open data and transparency.
A good entree to this can sector be found by reading Lucy Bernholz’s (@p2173 on Twitter) blog: http://philanthropy.blogspot.com/
“Disrupting Philanthropy,” a paper on which she was lead author, also provides some fantastic fodder for thought.
Her writing always gets the conversations going, just like here!