del-fi

My notes for the panel today at Health Datapalooza. I’ll come back later and add links, fix typos, and so forth…

Why consumer access to data is important

- because data is a digital representation of us. and it’s increasingly being used to affect our real-world services, their costs, their benefits.
- we’re increasingly able to generate data that used to be the exclusive space of the clinical system. genomes are just part of it. health data is in everything. Facebook cups, keyboards, iPhones, google’s next phone.
- but it’s faulty at worst, and incomplete at best. if we can’t access it, we can’t tell how and where it’s incomplete or wrong.


Use cases and potential applications for consumer access to data

- send to app provider to interpret data and help me make better choices about my care.
- send to app provider to interpret data and help me make better lifestyle choices (ideally not a panopticon of health provider, ATT, and government - but a decentralized, competitive market)

that’s what this event is mainly concerned with. but there’s more.

- extract the “real” clinical data (compared to the “dry” data from phones etc) from the record. needs a lot of normalization etc but it starts to paint a longitudinal phenotype of me and my life. mapped to my genome, in large in sample sizes, we can start to correlate lifestyle and medical treatment outcomes to individual genomic variation.

Current state of consumer access to data

- raw in every sense of the word. most folks aren’t exactly aware of the things we here are aware of.
- most of the data collection is happening in zones like mobile and social where we have no positive rights to privacy, like health, and where the entire system depends on designing awareness of the data (and its ownership) out of the hands of us as citizens.
- in health, access to data is hamstrung by a combination of rapidly advancing technology and slowly (that’s a nice way of putting it) adapting law.
- we just moved here from Oakland. when i wanted my son’s immunization records to get him into his new child care center here in DC, the provider couldn’t fax them to me because they were afraid it violated hipaa. but it would have been legal to hire a TaskRabbit - total stranger - to go pick them up, take them to Kinkos, and fax them to me.
- that’s insane. we’re not being protected. we’re not getting access at the rate or in the form that we need yet. it’s getting better, but it’s still slow. and we’re less willing to tolerate it, because we’ve been trained to expect more from our institutions by good technology.

Where we have to go next / role of Blue Button+

- the hard part is that most of us, when handed a file of data, don’t know what to do with it. i downloaded my genotype, my fitbit data. No idea what to do with it. compared to my “medical record” in PDF, which is computationally useless but human readable.
- the investment in BB will pay off best when I have the right to direct my file to someone who can do something with it, for whatever reasons i choose. whether to run an app that makes sense of the data or to donate the data to research.
- BB+ is a great example of this. It allows for both market solutions (banks!) to emerge and for pre-competitive or public private solutions to emerge where we can donate data, or share it conditionally.
- i’m looking forward to pushing Sage Bionetworks, the non profit where I work, to be one of the first certified recipients of BB+ precisely to enable the non-market reuse of health records data.

And, my friends, in this story you have a history of this entire movement. First they ignore you. Then they ridicule you. And then they attack you and want to burn you. And then they build monuments to you. 

Although the substance of the above quote is usually attributed to Gandhi, there’s no record that he actually said it. The quote above is by Nicholas Klein, a labor activist, from 1918.

I don’t include it as an example of attribution decay. I use it as a frame for where we are in the open access world right now.

We’ve had a good run. We got the NIH public access mandate. We got the petition to 25,000 signatures. We got the presidential directive extending the NIH policy across the entire federal government. We got multiple examples of open access publishers into sustainable revenue models.

But changing the default from closed to open was always going to involve a phase where those whose revenue models depend on closed really brought the guns out against us. And we’re there now.

There’s Wiley, wallowing in the mud and smearing Public Library of Science’s peer review credentials under the charade of a survey of authors.

There’s Elsevier, proposing a novel license for STM publishers and somehow magically being part of a Netaction “bad legislation” coalition that attacks all open access bills, while denying any knowledge of it (no story coverage, but some conversations on Alicia Wise’s twitter feed). (UPDATE May 24 2013: Times Higher Education UK has a story in which Elsevier sort of distances themselves from Netaction)

There’s crocodile tears covering the emergence of scammy open access journals, none of which mentions the long-time existence of scammy closed access journals. This is not surprising, as so many of the large, “authoritative and important” publishers make money by publishing scammy journals - anyone remember the Merck-Elsevier scammy bone journal? Still waiting to see someone mention that in the same breath.

Then there’s the systemic disadvantage we have as advocates once policies move into implementation phase. The meetings last week at the National Academies are a great example of why it’s so hard to change the system. I had to travel 3 of the 4 days for work, and the fourth day I was in meetings all day that made it impossible for me to attend, or to speak.

We have day jobs, us advocates. But the publishing industry we’re fighting against has no other job. They can hire people who have only the responsibility of making sure the open policies are implemented in the least open way. They can saturate every meeting in DC with hired guns, and claim it as evidence that the public supports them.

But it’s not about being depressed, or complaining. It’s a sign that we’re finally getting close to the bone. We’re enough of a threat not to be ignored, or ridiculed. We’re gonna get hit, and we’re gonna get hit hard.

We have to keep reminding the world that this isn’t about protecting a dinosaur business model, this fight. It’s not about scammy journals, which exist no matter how they get paid for. It’s not about who has the most lobbying money in DC. It’s not about new licenses, or sleazy survey language.

It’s about letting entrepreneurs build businesses on top of open content. It’s about kids building cancer tests on open content. It’s about you and me being able to read what our tax dollars paid for. Don’t let the FUD and mudslinging get in the way of that message, ever.

We have to keep getting up. We have to keep fighting back. Because in the end, we’re on the right side of history. And once we get through this phase we get to the good part, where they build a monument to Heather Joseph and Peter Suber and Mike Eisen and all the heroes of open access.

I got a lot of good responses to my post yesterday about Mendeley’s acquisition by Elsevier.

But a theme emerged that I didn’t intend to emerge, which was the idea that because I pegged Mendeley’s investment in open access as a customer acquisition strategy that it made it insincere.

That was most definitely not the point.

Remember that half the time I’m a senior fellow in entrepreneurship at the Kauffman Foundation. We study startups and support entrepreneurs. I can tell you that using openness as a customer acquisition strategy is something I think is a smart move, especially the way that Mendeley did it.

As a quick reminder for those who’ve never started a company, they need to acquire customers or they go out of business (as mine did, because mine didn’t). If you don’t have a strategy to do that, you’ll fail.

By selecting open, and fully committing to it, as a strategy, Mendeley helped the Open Access world enormously over the past four years. What they’ve done creates a solid track record in OA, a serious and provable one. They didn’t do this for evil reasons, or in anything close to an insincere way. And by doing it they advanced the movement. We can, and should, thank them. That’s why the anger stunned me, as I mentioned yesterday.

They hired a community manager (William Gunn) personally and professionally dedicated to OA, and let him run. I know, respect, and believe deeply in William and his commitment. That’s not an insincere company move.

Their data’s under CC-BY. That’s not insincere. I made a crack about allowing the database to be downloaded and reposted, and immediately heard back from William that I could go for it. That’s not insincere.

They ran the binary battle with PLoS (I was a judge!). That’s not insincere.

They backed the Access2Research petition, immediately. That’s not insincere.

My point wasn’t to gleefully give Mendeley the finger and say, you were closed all along, or to say, you were just using us to get customers. Every startup needs customers, and if you don’t realize that you’re kind of being a dick to the people in the startup. Mendeley’s making a meaningful commitment to open as a customer acquisition strategy was innovative, and important, and advanced the cause of open access to the scholarly literature.

My point was deeper. It was that because the openness was not tied to revenue, it could be removed now that the product didn’t need an innovative customer acquisition strategy. It’s tied to a massive customer base now. Open can be discarded. When it’s part of the revenue model, it can’t be discarded nearly as easily.

And in my experience, if open *can* be discarded, it usually *is* discarded when monetization becomes the priority. I hope that I’m wrong.

So Mendeley got bought by Elsevier. And there was much teeth-gnashing. I won’t link to it but it spawned two solid hashtags: #mendelsevier and #mendelete.

I have a Mendeley account, but never used it other than to test the system against Zotero, which is what  I use to track my own work. So I am not affected by this but I’ve been a bit stunned by the depth of the anger against Mendeley. I’ve waited to write this to try and understand it.

Part of it, I assume, is just Elsevier rage. Danah Boyd has summarized why Elsevier is rage-worthy nicely in her post on the acquisition.

But the greater part feels like the anger over what many seem to think is a broken promise made by Mendeley to be an “open” company.

I don’t feel that way. I never thought Mendeley was an open company. I thought they were deploying a strategic approach to openness by exposing their data under CC-BY, but I always thought that openness wasn’t the point of the company. It’s why I didn’t use the product and why I wasn’t surprised, shocked, or saddened by the acquisition.

It’s got me thinking though about companies and “open” - and what matters in deciding whether or not to use a product from a company claiming that mantle. For me it boils down to where the openness lives in a company.

There’s a lot of ways to slice this, but a simple one would be: is the “open” part of the revenue model or is it part of the market acquisition strategy? If the former, like BioMed Central, I have a lot more faith that an acquisition will not destroy the openness, because “open” is part of the way that the company makes money.

But the open access part of Mendeley to me always appeared to be a customer acquisition strategy. It appealed to the OA folks, it appealed to developers, and it never affected any monetization or revenues. There were always visible choices by management to hedge their open bets, as Jason Hoyt has laid out. And that makes it a risky bet to think they’ll stick with it now that they have access to a massively larger customer base while inside a company with traditional antipathy towards openness.

Again, I’m not mad. I either avoid, from a professional basis, companies built on closure, or I mitigate my expectations of them and do a lot of backing up. Because at some point unless the revenues come from open, the customer acquisition strategy of openness will be deprecated. If it isn’t, then the management of the company will be replaced with managers who are willing to shut things down to make money.

Always, always, always examine claims made by companies about openness. I’m not the world’s biggest Evgeny Morozov supporter, but he’s right to examine the way that the words “open” and “sharing” and “free” get co-opted. Facebook lets you share! It’s free, and always will be!

Look the gift horse in the mouth. And if the revenue model of a startup isn’t built on open, then feel free to use the tool. But don’t get emotionally invested, or dependent, no matter how seductive the rhetoric may be. Because at some point your use and attention and content will be monetized, probably in a way that bothers you.