I’ve been quiet on the Portable Legal Consent front for a bit, but there’s enough going on that it feels like time to make a public update on where we’ve been, where we are, and where we’re going. First, the study we’ve been running at Sage Bionetworks - the Self-Contributed Cohort - has yielded a lot of data. I’ve got a chapter in the Privacy, Big Data, and the Public Good book coming out later this year that goes into some detail, and we’ll be preparing a paper for peer-review later in the year as well. The short version is: Deploying interaction design is incredibly effective at increasing informedness in an e-consent context. We can get levels of informedness, even on complex concepts, that can outstrip traditional methods of consent. That’s the good news. Most people do not yet have enough data about themselves, or good enough data, to feed computational modeling processes that generate insights. Despite all the advances of patient-centered research, direct-to-consumer genomics, electronic medical records, and more, the data simply aren’t yet rich and clean enough to make the big data analytics tools really sing in a citizen-contributed cohort. That’s the bad news. If we want the kind of prediction engines in use by Amazon or Facebook or Google, which we use to figure out why drugs work in arthritis, generate insights for personalized cancer therapy, predict Alzheimers progression, and more…we need the kind of rich, clean data that comes out of structured study. Clinical studies are the best structured place at the moment to get rich, clean data about individuals to feed computational reuse. \tightlist Given these results, we have turned the revision of PLC towards the study itself. We have been working in partnership with the Electronic Data Methods (EDM) Forum as a Collaborative Methods Project. The EDM Forum is funded by the Alliance for Healthcare Research and Quality and is a multi-year project to build capacity for networks of actors working in health care. We conducted a series of interviews under the EDM’s guidance earlier this year as part of an in-depth interaction design process. We talked to giant clinical systems, hospital surgical centers, patient-powered networks, clinical data networks, patient advocates, and more. And to get to the million patients I’ve always wanted under PLC and make their data actionable for computation , we need to infuse PLC into clinical studies. This creates a requirement for decentralized approaches, which fits nicely with most of my underlying beliefs about networks (they are either dominated by a dictator at the center, or they’re built at the edges by lots of people using standardized tools - take a guess with my preference!). Clinical studies happen locally, and their protocols and consent forms are approved locally. Think of it as thousands of little pieces of software - legal code - that don’t interoperate. Thus, PLC 2.0 is not “one consent form to rule them all.” It is instead designed to make it easy for those writing the thousands of little pieces of legal code to add on functionality: getting the data from the study into the cloud for secondary reuse, and empowering patients to receive and transmit a copy of the data about them to other parties. It’s akin to a software developer’s kit, but for legal code. The beta of PLC 2.0 (which we’re calling the PLC toolkit) will be released in the fall of  2014. The toolkit isn’t going to contain any technology in this release. It’s instead a set of text documents containing consent language for various classes of data, wireframes for those classes of data, implementation guidelines for investigators running studies, and educational materials for institutional review boards. Supported data modules include mobile devices, wearable sensors, electronic medical records, labs data, and genetic sequences. All the files will be available under the CC-BY 4.0 license, so they’ll be infinitely reusable by all parties for all uses as long as we get attribution. I expect to see a few mobile applications using the toolkit as part of Sage’s BRIDGE project and partnerships coming out this fall. And we are conducting private alpha testing now and welcome anyone who wants to get involved and review - email me for details. In the interim, here’s a teaser that I showed publicly at the last EDM forum meeting. It’s the dashboard that sits inside mobile applications and manages a participant’s ongoing consent inside a clinical study. This is the kind of wireframe we’re designing.

If you’re new to the idea of open access and public access, brought by the sad energy of Aaron Swartz’s suicide, I urge you to try to be inspired by him and learn about the space. He was a voracious reader, an insatiable scholar. Follow his example. Do your research, read the overviews, follow the links. Learn is the first part of his four-part method. This is a well developed field, and though we need your energy, we need it very much in a learned and focused manner. There is already legislation. There are already organizations, advocates, resources. Get involved. Learn. Then Try. Then Gab. Then Build. But always, always, start by learning.

(after much complaining, I’ve moved my meme photo to the bottom of the page) I woke up this morning and found that my twitter feed had exploded with the news that GSK is promising to start making individual level data from clinical trials “open” to independent research. There’s not a lot of detail to go on. But there is enough to do some inferential analysis, and a little bit of historical context as well. I’m not surprised to see this. Perhaps that it happened now - I’d have bet on 2013 - but not that it’s happening. Sanofi is doing DataSphere (toll access, sorry for sucking), Eli Lilly is running a Clinical Open Innovation portal, etc. Pharma has already figured out that the creation of precompetitive space will be part of whatever new business models wind up supporting drug discovery. As for the swipes against academia…well, I’ll only speak from my own experience: I have had pretty much all of the top 20 global pharmas call me at some point over the last decade to explore data sharing. I have had maybe three academics call me. There are some good - indeed great - shared academic projects, but the relentless funding requirements and sharp elbows in grantmaking mean that data sharing is hard. There is a business case against sharing, from an economic perspective, in academia - someone else finds a golden ticket in your data, and you lose. That business case does not exist in biology data or in clinical data if you’re a pharmaceutical company. It’s about getting compounds into the patient and getting reimbursed. OK, on to the open part of all this. First, based on what the press release and news reports are saying, we don’t know if the data will be “open” or not - because the press reports don’t mention intellectual property status of the data. So, to the first point - is it open? We don’t know. Honestly, it doesn’t matter very much for a company like GSK, so I’d expect that they will indeed use a CC0 public domain waiver - they did so previously with their Tres Cantos malaria compound set, which is now underpinning open source drug discovery work. I helped, just a little bit, with that project while I was still at CC and I can tell you the hard part was getting GSK to agree to make the data public, not getting a good license onto it. Second, frankly, open from a copyrights or patents perspective probably doesn’t matter very much compared to the other mechanisms of control that are explicitly referenced in the reports. The release intimates that a select panel of judges will review a select panel of applicants and grant access. This points out the failure of “open” definitions to adequately grapple with data in my opinion. It’s easy to meet an open definition with this kind of data but only allow an elite group of scientists in to touch it, using strong norms that say “if you share it, you’re out of the pool forever” which don’t violate the various definitions - because of the obsession with intellectual property as the source of openness. Who will be the judges? Under what terms will they allow access? Will it be a liberal policy - one that says, by default, any reasonable request will be granted, and here’s what reasonable means? Or one that says, by default the answer is no? If GSK wants this to work, they need to go all the way and make it not just legally open, but accessible and usable. I’d like to see the data deposited in Synpase at Sage Bionetworks, as well as at a federal repository like NCBI or EBI. I’d like to see it under a set of terms that specify that any researcher willing to comply with certain terms - not attempt to reidentify, not attempt to harm, perhaps agree not to use the data to bring class action lawsuits (hey, for me, it’d be worth it if we could actually build a map of tox and ADME that worked - sort of a truth and reconciliation commission approach). And I’d like to see the world take a whack at it, not have to apply to have their research ideas judged. Anything less than this will be “half” open. And being half open is like half learning how to break a board with your hand in karate. You don’t break the board. You break your hand. It’d be a shame to have the first big pharma that tries this fail because they didn’t have the guts to go the distance. File under:

So, I have a commentary published in Nature this month about the importance of using a CC-BY license to achieve full open access. I requested the article be made freely available as part of my agreement with Nature, but they paywalled it anyway. It’s freely available now but not until after some embarrassing email and twitter hassling. I am not particularly mad at any of the parties involved. It just points out the power of the default switch being closed, and how hard it is, even when you’ve negotiated an agreement, to flip it to open. It points out the weakness of the author in negotiation with the journal. Maybe I’m the fool in the fool’s errand. Also, in the search for brevity that print journals enforce, I didn’t get to be as granular as I wanted. My quarrel is with the publishing industry’s attempt to write a new license and I have no wish to lump those with whom I have a philosophical disagreement with those OA advocates who sincerely dislike CC BY, like Heather Morrison or many in humanities, into the same pool. Anyway. Below are references for key points I make in the commentary. 1. Re: definitions of OA, see “Budapest Open Access Initiative” at http://www.opensocietyfoundations.org/openaccess, accessed 03/13/13 2. Re: restrictions in licensing, see Elsevier’s published contract with California Digital Libraries: ““Schedule 1.2(a) General Terms and Conditions ”RESTRICTIONS ON USAGE OF THE LICENSED PRODUCTS/ INTELLECTUAL PROPERTY RIGHTS” GTC1] “Subscriber shall not use spider or web-crawling or other software programs, routines, robots or other mechanized devices to continuously and automatically search and index any content accessed online under this Agreement. ”” online at http://www.google.com/url?q=http://orpheus-1.ucsd.edu/acq/license/cdlelsevier2004.pdf&usd=2&usg=ALhdy2_FmzOtI3JkKs-fJwirgig4WLA5fA, accessed 03/13/13 3. Re: “CC Plus,” see various comments in lectures at “FACT Seminar No. 1:  Licensing in an Open Access Environment: legal niceties, funder mandates and publishing challenges“ at http://www.stm-assoc.org/events/fact-seminar-no-1/?presentations, accessed 3/13/13 4. Re: CC BY, See “Creative Commons Attribution 3.0 Unported” (the “commons deed” with links to complete underlying license) at http://creativecommons.org/licenses/by/3.0/, accessed 3/13/13 5. Re: 70+ requirements, see “Public Policy Requirements, Objectives and Appropriation Mandates” at  http://grants.nih.gov/grants/policy/nihgps_2010/nihgps_ch4.htm, accessed 3/13/13 6. Re: community defintions of open things, see “Open Knowledge Definition” at http://opendefinition.org, accessed 03/13/13, and “Open Source Definition (Annotated) at http://opensource.org/osd-annotated, accessed 3/13/13 7. Re: license incompatibility, see “GPL-Incompatible Free Software Licenses” at   http://www.gnu.org/licenses/license-list.html#GPLIncompatibleLicenses 8. Re: decomposition of licensed elements and the CC licenseed Time Photo of the Year, see “Trapped Underground,” a CC-BY photograph of the London Bombing aftermath, available at http://en.wikipedia.org/wiki/File:Trapped_underground.jpg  accessed 3/13/13 9. Re: technical solutions to provenance, see “Source Attribution in RDF,” http://www.w3.org/2001/12/attributions/ accessed 3/13/13

The Synapse software we run at Sage Bionetworks is open source software. That’s a statement that has a certain set of expectations that we provide you, the user, with some serious powers: you can download the code from github under the Apache 2.0 License, you can grab our bug tracker. We’ve invested in developer documentation. That’s what “open source” means. You can get our code. You can change our code. You can redistribute those changes. You can sell our software and never tell us or send us a check. There is an Open Source Definition that spells this all out clearly, arrived at via community consensus, and long used to adjudicate claims of open source-ness. There’s a rub, though. The definition is based on the distribution terms of the software - the legal tools that wrap around the code and govern its use and reuse. And we comply with all those terms. But Synapse has been built from the bottom up as a cloud-based service, Our users love that aspect. Our developers develop for that. And that creates a very interesting conundrum. We run a product that is clearly, legally, technically open source. But the definitions that govern our ability to make that claim about a piece of software don’t reach anywhere into the operations of that software - the way that we run it. This has big long-term implications. It’s thus possible to market an organization as an open source software organization, yet to architect a radically closed service built on it. It’s not what we do at Sage, or where we’re going, but it’s something that we have learned, almost by accident, that’s entirely doable. The Free Software Foundation has written about some elements of the relation between services and freedoms. But there’s not a roadmap for an organization that wants to run an open service for free. We need to watch out for for Fauxpen Source here. Not everyone can stand up an Amazon instance and run a cloud service, even if they’ve got the license rights to do so. Not everyone has steady internet. Not everyone will pay attention to the details when they see an open source stamp. Not everyone will pay for open services. And costs are a big part of the rub. Open source in the old technology model is inherently scalable at a fairly low cost other than the costs of development, which can be either paid or volunteer. The usage of the software doesn’t add much cost. If everyone is downloading and running code locally, then you don’t need a big budget for users and their usage. In a service context, our costs scale with our users - maybe linearly, but given that we store genomes and genome sequencing is cheaper every day, maybe exponentially. Open as a service is where we’re going. But no one has a map yet. If anyone’s got ideas, please get in touch.

I’ve been following the 23andme saga with dread and fascination and frustration since it hit earlier in the week. If you’re not up to date, David Dobbs has the canonical collection of stories to get you there. This is a post about business models and culture clashes. It’s long. I should also start by disclosing that my former non profit project received funding from Anne Wojcicki’s philanthropic foundation, that I hold some shares in small startups that could benefit from the success of direct to consumer genomics (though not in 23andme) and that I now work at a non profit that is premised on the idea that personal access to data will fundamentally change research. My 23andme data is online for all to download. So I could personally benefit if 23andme survives and thrives, and I personally admire Anne and her work, even when I criticize some of the choices she makes. It’s hard as hell to be a CEO and she deserves credit for icebreaking, vision, and perserverance. That said, I am deeply frustrated by the simplistic narrative of OMG FDA BIG GUBBERMINT SILENCING DARING ENTREPRENEUR. It’s not that simple. 23andme has been trying to bring a technology business model, and a bayesian data culture, to the genetics world for six years. Both of those were gambles. And I think the problem they’re in right now is a direct consequence of those gambles not paying off yet. First, by a technology business model, I mean the idea that you go get all the users you can get by giving your service away for free and figure out a way to make money later. This is no different than social networks business models. Facebook, Twitter, Instagram, Snapchat - all of them started with this concept of acquiring the most users and then working out a model for revenue. And all of them converged on advertising, because for all the promises of the new network, selling people sweaters worked better than anything else. As a business model for genetics though, it’s different, because your cost isn’t just distributing an app and paying Amazon cloud fees. 23andme has been selling their direct-to-consumer genotyping kits for six years now, always at a deep discount to their actual price. They exacerbated that financial model when they dropped the monthly subscription requirement last year. If they can’t find a way to make money soon, they’re going to wind up in the pets.com box - you can’t sell a dollar for fifty cents and expect to make money on volume. I would guess that the hope was that population genetics would yield a business model that wasn’t regulated. If you could get enough people in the door, then your internal analysis could inform efforts at pharma, at insurance companies, and more - without ever having to market your spit kits as medical devices in the regular business model. Their push to hit a million users indicate this remains a goal. But since they’re not doing that yet, it seems they’re not at the magic number. That means going the traditional route, which is to develop and rigorously validate a test, get it approved by the FDA, and then market it at an incredible markup. That’s what 23andme tried to do in this run. They invited the FDA in the front door, and at least so far, haven’t been very good about serving them tea. We’ll find out more about why later. But I posit the data culture that permeates technology companies is at the root of the frosty relationship between the FDA and 23andme. It makes it very hard to pivot from a model based on loss leadership and data mining to one based on regulatory submission. That “traditional” submission to the FDA would be of a very specific kind of analysis based on randomized controlled trials. It is designed to keep bad things from happening to people, not to make sure good things happen to people. As one of my favorite papers lays out, parachutes would not receive FDA approval as a gravity-resisting device. Modern tech culture doesn’t work that way. Bayes’ rule is about probability. It’s a different way of knowing that you know something, and it’s one in which there is far more tolerance for uncertainty than the FDA is accustomed to. And there’s been statements by FDA officials that they are deeply uncomfortable with that. Note in particular Janet Woodcock’s statement that causal inference needs a “level of rigor” - and the date in late April. It’s right before 23andme cut off communication with the FDA. The FDA isn’t saying that 23andme needs to shut down, or stop giving people data, or stop providing spit kits. It’s saying their causal inference doesn’t hit the level of rigor that allows it to pursue a technology business model in the health regulatory space. That’s a gamble 23andme was always taking, that the FDA wouldn’t know how to regulate it in time for it to make money. It’s not an overreach, or a screw job on patients. It’s just business. And I hope this isn’t the end of it. We need DTC screening. It helped me. It’ll help many others. But until the FDA learns how to deal with Bayes’s rule and its discomforts - and until DTC companies figure out a business model that isn’t based on massive loss leadership - we’re going to keep coming back to this clash of culture and business models. Both sides need to make some changes if we’re going to avoid doing this over, and over, and over.

Lots of stuff trumping blogging right now. TCGA Pan-Cancer analysis published. BRIDGE funded. ImpactStory funded. Giving a ton of talks, and a few big publications coming in the next few months. Be right back.

Now that I’ve had some time to process thenew White House public access policy, here’s a few thoughts. First and foremost, I think the policy is worth celebrating. This is something on which there is a difference of opinion. Mike Eisen is the most vocal and eloquent critic of the policy, and his post on the topic is essential reading whether you like his position or not. I disagree with Mike on the conclusion, but it’s worth examining why. And it’s not worth attacking him - indeed, attacking each other is a feature of the OA movement that sickens me. But I think his position comes more from a worldview where there is indeed real movement towards true OA (i.e., no embargo, open copyright licenses, and a total change of the publication industry via startups both non profit and for profit). Compared to that progress, the policy is like going back in time to when the NIH had no policy. But here’s the thing. That progress simply doesn’t exist in most of the other spaces where the US Government invests in research. It doesn’t exist in agriculture (100,000 papers per year which will be key to food supply and debunking bullshit claims about GMO food, for example), or defense, or trade, or patents, or space science, or energy. I wrote a paper with my dad on open access and energy policy (my dad is a climate change adaption scientist with a piece of the IPCC Nobel Prize) that opened my eyes to just how little of the energy literature is OA. If you look at the links in an IPCC report you’ll be shocked at how few you can read. None of the green, or gold, OA conversation has had a significant impact there at all. Compared to the world that exists there, a world that is not being wrenched open by change and entrepreneurs and repositories, this policy is indeed enormous progress. I don’t like the embargo entrenchment at 12 months. I don’t like the lack of reuse rights. I don’t like allowing linking into journal archives as opposed to centralized repositories. I don’t like the praise of the dying traditional publishing industry, but that’s pablum. So let’s be frank. This isn’t a strong open access policy. But that’s ok by me. Because it’s an enormous expansion of public access into spheres of research where it was essentially absent from the conversation. It creates a policy environment that tilts the field towards change, towards startups, towards publishers whose embrace to real Open Access becomes a competitive advantage over time - and it does so across an enormous swath of science. It re-creates the conditions built in the life sciences years ago in other sciences. I believe that’s what will advance open access fastest there. But let’s also not attack Mike, or others, who disagree. We need to be constantly reminded to strive for the most, and attacking one’s own critics is not a healthy sign of an open movement. This policy is not the end of our work in open access, or even the beginning of the end. But I do believe it’s at last the end of the beginning of the enormous change from closed publication of science to open publication of science. From now on it’s about how we implement access, not if. Hats off to everyone, and now get back to work, because we’re a long way from done. Time to focus our energy on Congress to finish the job.

Yesterday, U.S. Secretary of State Hillary Clinton announced the Open Book Project, a major initiative to make Open Educational Resourcesavailable in Arabic. There was a big launch program at the State Department, and some remarkable words from Mrs. Clinton: You can look around the world and see young adults in remote villages and towns huddling around a computer watching videotaped physics lessons by MIT professors. Top universities like Rice University are creating free online textbooks and saving students money in their studies. Science education websites like Khan Academy go viral. There are other examples, and these are all fruits of technological progress, but also of a commitment to make more learning materials open – free, open licensing for anyone to use, adapt, and share. (from the text of Mrs. Clinton’s remarks - emphasis at the end added by me) I was one of many people excited to see these kind of words. I’m always glad to see this kind of phrasing about copyright in the halls of government, because it indicates at least some understanding of the potential of open copyright licenses to create innovation. But then I started thinking more about it, and the uncritical acceptance of the project without a conversation about the politics of it started to bother me. I still think it’s a worthy, and wonderful project. But let’s unpack what we’re doing here, as a government. It seems to me that we are applying state power to create digital knowledge resources that (probably, maybe, definitely) subvert the attempts of both state and non-state (social, religious) actors to control the kind of educational materials available in the Arabic speaking world. That we are practicing, as statecraft, what Nils Gilman has called deviant globalization, using an open source approach. And that’s worth contemplating. I do not think that this is an embrace of open copyright because of philosophical shift in favor of openness. I think it’s a pragmatic piece of realpolitik - getting textbooks into a language and format where they can evade the controls imposed by actors whose interests are felt to be contrary to the US. The theory that more knowledge in more hands is better for the world is one I happen to subscribe to, and agree with, but let’s not pretend this isn’t an exercise of state power. It is far more like the Voice of America  (especially at its founding, when it was not required to provide “unbiased” news) than it is like Free Software. Note: I edited this post at the end with the bold text in the final sentence at the suggestion of Dave Clifford after it was first posted.

Yaniv Ehrlich’s lab at MIT has a new paper out in Science today, with a companion policy piece from the National Human Genome Research Institute at NIH. Apologies for icky paywalls but these are important papers. The gist is that a savvy computational scientist can find enough breadcrumbs in a genome to figure out the surnames for participants in supposedly de-identified studies. The methods for the paper are reminiscent of the re-identification approaches against the Netflix database, the AOL search database, and the Massachusetts health records database: cross-referencing de-identified information with other public information, and then using that against other records associated with surnames. And it gets bigger - 135,000 or so records may potentially identify millions more through inheritance of short tandem repeats. I’ve probably mangled the approach. The short version is perhaps better summed up by a picture:

There’s a ton of activity around the web for Open Access Week 2012. There’s eleventymillion events in person and online around the world for you to engage in. I’m not doing any, for the first time in a long time. The OA movement is running downhill now, for real. Despite the squeals of those who would defend a broken business model tied to a broken access model, this one’s pretty much over. The question isn’t “if” open access, it’s “how” open access. OA isn’t going to be pretty, just as the old system wasn’t pretty. Using the flaws of the publishing industry itself as a rationale to ration access is a weak strawman - conflicts of interest and hucksters flacking bad journals aren’t exactly an invention of open access. They’re part of publishing. But Open Access means vastly more readers, and wider distribution of knowledge driven by science. And in the end, that point trumps all - especially given the public investment made by taxpayers in science. There is no constitutional protection for industries disrupted by network effects. Just ask Borders. Anyhow. This year’s been a weird year for me in OA. I’m not working in the heart of the movement, having moved over to try to make it easy to donate your data to science instead. But I did help poke a stick in the White House’s eye with the Access2Research petition, for which we are still awaiting a reply. Honestly, once August came and went I gave up hope of hearing anything before the election. The news cycles in a presidential election, especially one as taut as this one, magnify everything. An OA policy would’ve been jumped on by the Romney campaign, quoting those Elsevier stock hits as American job losses on the way. I remain very hopeful that the answer when it comes is a policy extending the NIH public access policy across all federal agencies but I’ve always been willing to believe. The extension of the policy is the natural end game for OA in the US from a taxpayer perspective. It’s not the end of the movement though. Now we need to avoid fragmentation. We need ORCID to actually not just mint identifiers, but itself act like an open organization (give us the freaking source code already, ok?). We need more entrepreneurs starting new publishing businesses, and testing new business models. We need big publishers to recognize the opportunity - to be the IBM/open source of the space. And we need some acknowledgment that licensing, in the end, is really important. If it ain’t CC-BY, it ain’t compliant with the community definitions of OA. It’s better than no access at all, but we should never, ever trade away our rights in return for free stuff, even if that free stuff is knowledge. Congrats all on a great year, and here’s hoping I get a good excuse to bust out the Snoopy Dance sometime in November.

I got a lot of reaction to my slides today at Strata Rx, but there was one part that worried me a bit, which was the reaction to my comments about filing for developer credentials for 23andme’s API. I applied during the first day of the conference. I’m asking to develop an application that sits just after the Portable Legal Consent process, so that people who have gone through the consent and are 23andme customers can just zap their data over into the open commons. I immediately got testing credentials. It’s so far a very professional setup and I commend them on the ease of the process. I’ve written about 23andme’s getting patents. And I really hope they’ll make it easy for people to export their data, starting with the genotype but ideally at least including some basic phenotypic information. If we could even get just the equivalent of the form that you fill out when you sign up - like when you go to the doctors’ office… But I always want to come back to this. I tweak 23andme but they deserve enormous credit. They show up, time and again, where other companies in the space don’t. They talk to their critics. They fight the fight at the FDA. Were there any other DTC genomics companies even in the room at Strata today? The vision is one of real change, and one that has room for a commons in it, even if it’s not all we want yet. I’m going to keep tweaking, but that’s because I think 23andme can set the tone for an entire industry by facilitating data portability through their API, not just through a lengthy manual download process. I don’t think anyone who wants to export wants to leave 23andme - I sure don’t. I just want to send a copy to a place where there’s more eyeballs because there’s lower barriers. Most people won’t. The secret of the commons is that it takes a shockingly small number of people to pull one off…though it does certainly help to have seeds. And the success of the more eyeballs space will only increase the value of the coherent, internal data set at a place like 23andme. It’s a long look kind of investment. But it would cost nothing other than a small number of people’s data sets becoming non-rivalrous, and could potentially bring enormous returns.

My TED talk went up yesterday. And whatever snark you hear about TED, or the TED brand, know this. The conferences are amazing in person. I go to to conferences. All the time. There is nothing like TED. Part of it is the seriousness of it - no laptops, no tablets, no phones, except in the very back of the auditorium. So if you want to be close to the speaker, you have to pay attention. And people do. It’s the most attentive audience I’ve ever seen. I spoke at the end of the week, on the last day, at the end of the first morning session. The crowd was tired, hungover from the grand party, and it was probably the only session where there were seats available from beginning to end. Imogen Heap gave a surreal performance just before I went up. Suffice to say I’m not used to that as a warm up.

The best time to plant a tree was 20 years ago. The second best time is now. - Chinese proverb (supposedly - but lots of difficult-to-source good quotes seem to be attributed to a Chinese proverb) Building the digital commons is a tricky thing. It’s not all that different from doing a startup. If you’re at the right time, people are telling you you’re crazy. People have failed at your task. Big companies have yanked projects. The market isn’t ready. But that’s when you have to build. Because once a market gels, inserting competition from the open is very difficult. See: Diaspora. It is far better to ensure from the get-go that credible competition exists from the open source side, so that the entire market is affected by the credible threat that customers can bolt to open source, open data, open content, open systems. I would argue we’re at this point in the personal data revolution. We’re awash in devices that collect data, which will look paleolithic in five years. We’re on the edge of ubiquitous electronic health records for everyone, which will actually start to be useful in five years. We’re already at the $1000 genome, which will be $100 in five years. It’s easy to say, just wait. After all, Google exited the health records business. None of the big players in personal genomics or health has more than 150,000 total users (I don’t have a link, but this is what I’ve been told by management at a variety of companies) and a tiny fraction of those actually log in each month. Don’t plant the tree yet. Wait til the ground’s ready. Now is the time to build a commons out of our personal data. Not in five years. In five years, the walled gardens will be so big most people won’t notice the walls. But walled gardens don’t lead to the kind of innovation we need. They lead to monopolistic, bullying behavior when the walled garden needs to hit quarterly results. It’s not about shutting down the companies. It’s about changing the overall composition of the market’s ecosystem through openness. Openness means that the non open players have to treat us better, because then we have an option to simply leave. Openness in web browsers and web servers changes the closed browsers and closed servers, in ways that we don’t have in social and mobile (despite the promise of android, it’s faux-pen, not open). Now’s the time to plant the trees in personal health data.

An old friend of mine asked me, after seeing my torrent of posts about the Access2Research petition (go sign it PLEASE) asked me this: What the heck is this all about? I hate the fact that the Internet people can use cookies to spy on me, track my computer use and invade my privacy. Will your open Internet protect their ability to continue to violate my privacy? This is a really old friend. We met 22 years ago, in school. We took introductory philosophy together and we were jackals in that class. We lived across the hall from each other the next year. He’s one of the smartest people I met in school, and a genuinely good guy. He actually wrote letters to his friends, including to me, before there was Facebook. He introduced me to online networks - I first got on the internet via his Mac, onto AOL, in 1991. The fact that we have to explain open internet to my friend is part of the problem we face. Indeed, it may be the most important part of the problem. So, old friend, here’s why I think this is important. The internet itself, and the web itself, are “open” at their core. That is to say they are built on open technical standards that define how computers send bits across telecommunications networks (the internet) and how computers send and reassemble and display documents across networks (the web). No one can “own” these standards. No one can lock out anyone who wants to add a computer, or add a web page. And anyone can *add* stuff to both the internet and the web - including security, like https (on which Amazon transactions thrive securely) or social networks like Facebook. You need never ask permission to add things to open systems. The market decides if they work or not. The openness of the systems is at their core. The thing is, building closed systems on top of the open internet is awesome business. Thus, companies build browsers that track all your behavior (sometimes they even offer you small cash prizes!). Facebook tracks you while you’re logged out. The only reasons browsers are even contemplative of “do not track” is because the competition from the open - Firefox - is so strong. In the absence of competition from the open there is just exploitation. That’s what Facebook’s all about. I use Facebook. The question was posted on Facebook. It’s a great way to communicate with my family and old friends. But the lack of competition from the open allows Facebook to make choices in a lopsided market, ones that we don’t have to worry about when it comes to the internet. Because Facebook can delete your page at will. Facebook can shut down your app company at will (this applies to Apple as well). There’s a czar in a closed system, whereas in an open system, the center is shared openness, what William Gibson called a consensual hallucination. So in open systems, it’s actually both more likely that someone will build tools to exploit your privacy (because it’s good business and has already happened) and that you’ll be able to resist those tools (because there is competition from the open and you’ll be allowed to install resistance software). In a closed world, only the former takes place. I see open access to the scholarly literature as part of that continuum. Freeing knowledge from behind artificial walls makes knowledge an open system like the internet or the web. That’s going to mean a lot of the scientific and scholarly equivalent of cat pages and blink tags and all the bad stuff that went along with the early web. That’s going to mean a lot of pseudonyms and trolling like we have with today’s web. But it also means that good businesses can be built on top of the knowledge web, and that as those businesses inevitably look to monetize, we have the freedom to resist the less savory choices they might make. Open systems are about freedom. Not just of cost, but in the constitutional sense. Sign the Access2Research petition. Please.

I’ve been working up to a rant on twitter lately about Open Access, as the Access2Research petition’s first week drew to a close (sign it). The usual suspects are making the usual arguments - OA will dictate where scientists have to publish, OA will kill peer review, and most offensively to me, science is too complex for us unwashed liberal arts heathens to possibly understand, so no good will come of access. But science is a place where we keep out the unwashed masses. We no longer credential computer scientists (well, universities churn them out, but your credentials on github matter a lot more to savvy programmers than a CS degree from a state university - you’d be better served majoring in something fun and checking in code to open source projects). Has innovation in computer science been a problem? [crickets chirping] Basically every knowledge based discipline that runs on digital content has been transformed. Software. Journalism. Music. Video. And you can track the innovation patterns of each one based on the level of control that institutions maintain. Note: not all innovation is useful - most of it is shit - so part of my argument is that radically increasing the rate of *all* innovation is the best mathematically certain way to increase the rate of *useful* innovation. It’s like art. Most art sucks. But if enough people make art, then even if the rate of awesome artists doesn’t improve, making more people overall be artists means more awesome art . That’s what’s happened in software. More people make it. That means more shit software. We just don’t use it (ever browse the Android app store’s dregs? Sheesh). It’s happening in journalism, whose business model turned out to be based on classified advertising and got eaten by Craigslist, the ugliest website on earth. It’s happening in music, where Apple ate the music industry’s lunch, where artists can raise a million dollars on Kickstarter just as their old labels go bankrupt. But science isn’t like that. Science is a lot more like the cable industry. Comcast and a few behemoths control the last mile of the internet to most houses, and so we don’t even realize the world we live in is radically limited. Internet in the US is so bad compared to so much of the world and we don’t even see it. Toll access publishers of science are just like Comcast. They want to control the last mile. And scientists who buy into the argument that those of us in our houses, lacking credentials to understand their science, are perpetuating a knowledge lockup. They’re on the wrong side of history. You see, it does not matter if 999 of the 1000 people who read an open access article, who might not otherwise have been allowed to read it without paying $50, fail to understand it, believe they have disproved the second law of thermodynamics, etc. It matters that the one person does read and understand is provided access. Because then, in that moment, we’ve created a scientist - or at least the makings of one. And the only people that threatens are those counting on their credentials to keep them competitive, or profitable, or employed. Since I’m none of those three it’s pretty easy to support open access.

In my spare time when not working on Portable Legal Consent, I continue to work on Open Access issues. About ten days ago, I got home from vacation to news that I could go to Washington DC and meet with John Holdren, the Science Advisor to President Obama. He’s a nice guy, and it was a great meeting. He seemed to understand the issues and our points. Like any good political appointee he was non committal of course. But it was a brutal trip. Redeye on a Tuesday night from the West Coast after a full day of meetings, change into a suit (and shave) in a public bathroom because Dulles Airport has no showers, meeting, back onto the plane home. And it hit me - us, because I was with Mike Carroll, Mike Rossner, and Heather Joseph - that the redeyes and the meetings and the arguing were not carrying the day. We needed to do something else. So we started the Access2Research campaign to engage the public in open access. Please go, read the context, and if you agree, sign the petition. The only thing missing from the open access debate is the public. You can remedy that - but you’ve only got 30 days to sign, and we need 25,000 signatures to carry the day.

I come back from vacation and nearly have an aneurysm. Seriously, someone thinks we should extend the HIPAA model to consumer privacy. Because it works so well. Encourages so much innovation. Protects consumers and customers so thoroughly. Let’s use one of the worst-working data systems we have as a model! It is depressing how often we in the “open” world have to say this, again and again. More control via rights is not the answer to every problem. Not in copyright. Not in patents. And not in privacy for data.