Select Committee Inquiry into Clinical Trials Data

Back in November last year, I wrote about a particular class of open data - that regarding clinical trials data. I pointed out that of all open data, it is arguably the most important, because it can literally save lives - huge numbers of them. That post was by way of a taster for future columns - like this one - which touch on this area, since I believe it will become one of the most important battlegrounds for openness in the next few years.

On Open Enterprise blog.

How Open Data Can Save Money - and Lives

Yesterday I was writing about open access and open data in the context of the EU's Horizon 2020 initiative. Closer to home, I came across a wonderful real-life example of how open data can almost certainly save not just money, but lives.

On Open Enterprise blog.

Who Owns The Data Collected About You From Devices Inside Your Body?

People have started to wake up to the fact that companies like Google and Facebook hold huge quantities of data about their users. That raises questions about who owns what there, and to what extent users should be allowed access. Now Hugo Campos is asking the same question about a different kind of personal data – that being collected by a cardiac defibrillator implanted in his chest: 

On Techdirt.

The Perversion of Copyright

The first copyright law, the Statute of Anne - which definitively moved copyright away from its original roots in state censorship - was:

An Act for the Encouragement of Learning, by Vesting the Copies of Printed Books in the Authors or Purchasers of such Copies, during the Times therein mentioned.

That is, it was unequivocally about "encouraging learning" by promoting the publication of books. Against that background, this is pretty extraordinary:

Medical Justice was founded in 2002, and today has about 3,000 members, located in various states and representing different medical specialties, who pay an average of $1,200 a year. The company sells membership as a batch of services, mainly centered around helping doctors that are facing medical malpractice litigation. But the Medical Justice benefit that has drawn the most scrutiny is its program of fighting “physician internet libel and web defamation.” The system works by getting patients to sign contracts that assign away the copyright in any future review they might of a doctor—to the doctor.

...

an effort to help doctors get around Section 230 of the Communications Decency Act (an “arcane nuance of cyberlaw,” according to Medical Justice’s website), the law that protects web services from getting sued over content posted by their users. When doctors send review sites a note complaining that a review is false or defamatory, the website is protected by CDA Section 230 and is unlikely to remove the review. But when the same sites receive copyright takedown notices, the law compels them to act—and act quickly. Section 230 doesn’t cover intellectual property claims, and copyright infringement has harsh legal penalties.

There are several interesting things going on here.

First, there is the preferential treatment given to alleged copyright infringement over alleged libel. Obviously US law disagrees with Shakespeare's words:

Who steals my purse steals trash; 'tis something, nothing;
'Twas mine, 'tis his, and has been slave to thousands;
But he that filches from me my good name
Robs me of that which not enriches him,
And makes me poor indeed.

But more seriously, copyright is being wrenched far from its stated purpose of encouraging learning to become an out-and-out tool of censorship - in an ironic return to its medieval origins.

In a way, that's hardly surprising: copyright is a monopoly, and monopolies by their very nature are about exercising control over people. What's odd here, though, is that copyright is being employed to exercise control over someone else's possible future creation - it's an *anti*-encouragement to creativity.

An excellent new site set up to fight this worrying move - wittily entitled "Doctored Reviews" - explains why this is so dangerous:

Medical Justice’s efforts may be a sign of things to come. Imagine if other companies used similar contracts. Before you get a haircut, before you buy a six-pack of soda at the local grocery store or before you order a meal at a restaurant, imagine you were required to keep quiet and never post your opinion online about the product or service you purchased. Sound ridiculous? It does to us, and we think it’s no less ridiculous when doctors demand this of their patients.

Ridiculous, maybe, but sadly not implausible: the enforcement of intellectual monopolies is being used to justify extreme international treaties like ACTA and TPP. The treaty "obligations" give participating governments around the world a handy excuse for the imposition of laws that seriously curtail civil liberties and human rights, while laying the blame on their treaty partners (the same circular trick was used to justify keeping the ACTA treaty secret: it was always some *other* country that wanted it that way.)

The present episode is merely part of this larger abuse of ancient and by-now unnecessary monopolies - the perversion of an already perverse system.

Follow me @glynmoody on Twitter or identi.ca.

Dr Microsoft: Time to Be Struck Off

A Microsoft researcher offers an interesting medical metaphor:

Just as when an individual who is not vaccinated puts others’ health at risk, computers that are not protected or have been compromised with a bot put others at risk and pose a greater threat to society. In the physical world, international, national, and local health organizations identify, track and control the spread of disease which can include, where necessary, quarantining people to avoid the infection of others. Simply put, we need to improve and maintain the health of consumer devices connected to the Internet in order to avoid greater societal risk. To realize this vision, there are steps that can be taken by governments, the IT industry, Internet access providers, users and others to evaluate the health of consumer devices before granting them unfettered access to the Internet or other critical resources.

So, we're talking about computers "compromised with a bot": now, which ones might they be? Oh look, that would be almost exclusively Windows users. And why would that be? Because no matter how diligent users are in installing endless security updates to the Swiss cheese-like applications known as Windows, Internet Explorer and Microsoft Office, there are always more critical bugs that pop out of the proverbial digital woodwork to lay them open to attack and subversion.

So, where does that leave us when it comes to "improving" and "maintaining" the "health of consumer devices connected to the Internet"? Well, it means that by Microsoft's own logic, the solution is for everyone to junk a system that is still insecure, despite promise after promise after promise that this just was some minor technical detail that Microsoft would fix in the next release.

For Windows has manifestly not been fixed; moreover, Windows will *not* be fixed, because it's just not a priority; Windows may even be *unfixable*. The only sane solution is for people to move to inherently safer (although certainly not perfect or impregnable) alternatives like GNU/Linux.

For a researcher at Microsoft to attempt to avoid this inevitable conclusion by pushing the blame for this endless series of security lapses onto end users this way, and to suggest they, rather than Microsoft, should be thrown into the outer darkness. is beyond pathetic. (Via @rlancefield.)

Follow me @glynmoody on Twitter or identi.ca.

WikiPremed: Making Money from Free

The virtues of free are pretty inarguable, but advocating the open release of stuff inevitably begs the question: but how do you make a living from it? So it's always great to come across a *thriving* business built on giving stuff away, like WikiPremed MCAT Prep Course, "an open access comprehensive course in the undergraduate level general sciences".

Here's some background:

WikiPremed was created to make it easier for an intelligent, motivated person anywhere in the world to become a doctor. For premedical students in the United States, there is no better learning program than the WikiPremed MCAT Course for securing the level of mastery that earns a superior MCAT score. In addition to improving the accessibility of science education, the WikiPremed MCAT Course is an important contribution to educational design. This learning program teaches the physical and biological sciences within a unified curriculum, an approach developed over many years working closely with college students in small group teaching. The WikiPremed MCAT Course consists of twenty modules. Each module contains fifteen to twenty hours of videos and assignments. The resources here can be utilized as a stand-alone MCAT course or in combination with another course. There are no restricted areas on this website. You can study at WikiPremed for as long as you want. It is often useful to begin WikiPremed several months prior to beginning a live course to establish the conditions for the full realization of the potential of the live course within a more ambitious program.

And here's the key thing:

The WikiPremed MCAT Course is open access. There are no restricted areas. Although registration is free, when you find yourself relying on this site in a significant way for MCAT preparation, please make a one-time $25 Tuition Payment.

But that's not enforced, so there's always the risk that people won't pay. Happily many do, but more importantly, the site generates money from products that are complementary to the online content.

Given that many remain sceptical about the viablity of this approach, I emailed the creator of the site, John Wetzel, who filled me in on how things work:

Basically, the development of the WikiPremed content has been going on since 1994, and at this point, it is a very large body of work. I think it helps to look at the content from an object oriented programming model and think of the various modes of presentation as methods of the content objects. Everything is licensed creative commons attribution, and we make the online methods freely available, so for example, you can find the entire set of Physics Flash Cards online. We offer the printed versions of the things for which print may be appropriate for sale for a very reasonable price, and students do buy them because print has its own advantages. We put the whole set of physics cards online (three years of work!) and the students still buy the printed cards any way. Even if they want to support the work, I think they like to have a commercial arrangement and a simple value proposition.

There is one work, however, the Premedical Learning System, which sells for $32.95, where the advantages of the print version are so great, compared to the online presentations of the content, which are extensive, that we call the printed work 'essential' for the course, and it is definitely a good value. It's also a board game!

Students need printed study materials, and they get sick of the computer, so I definitely think there is room for creative commons educational content supported by print publications. I think there is an ethic to not holding content hostage to purchases, but I think there are commercial advantages to the open model as well. I don't doubt that the average customer at WikiPremed has 1000 page views before purchasing anything.

I am sure that if there were registration walls and missing chapters I would have fewer customers.

I'm not getting rich or anything, at this point, but it is working.

What's interesting here is that once again it's analogue goods that bring in the money, while the digital side does the marketing - a pattern that is emerging in many sectors.

But irrespective of the how, the simple fact of WikiPremed's success is good news: it means that Wetzel is likely to continue to offer his content for free, helping who knows how many impecunious students in the process; it also means that free content has another great case study showing how you can make money from giving stuff away.

Follow me @glynmoody on Twitter or identi.ca.

Why not Participatory Medicine?

If this participation thing is so great, why don't we apply it to something really important, like medicine? Why not, indeed?

Welcome to JoPM, a New Peer-Reviewed, Open Access Journal

Our mission is to transform the culture of medicine to be more participatory. This special introductory issue is a collection of essays that will serve as the 'launch pad' from which the journal will grow. We invite you to participate as we create a robust journal to empower and connect patients, caregivers, and health professionals.

More specifically:

Because the Journal of Participatory Medicine is a new journal publishing multidisciplinary articles on topics within a new, not yet defined field, we have established draft parameters that define the journal’s range of interest. We anticipate that these parameters will change somewhat as the field develops. In the meantime, the following characterize the field of participatory medicine.

I particularly liked the following section, with its emphasis on openness:

New Knowledge Creation stems from the collaboration of researchers and patients, as individuals and as groups.

1. Health professionals and patients sharing in the discussion of scientific methods, including open discussion about the level of evidence of the research

2. Open, transparent process that demonstrates collaboration and participation in research

3. Patients with significant interest in a topic joining together to create repositories for research, including (but not limited to) registries, tissue banks and genetic databases; demonstrating mutual respect for the contributions of the data owners and health research professionals with the tools to gain insight from those repositories. Interpretation of results and conclusions including involvement of all stakeholders.

Important stuff, worth a read.

Follow me @glynmoody on Twitter or identi.ca.

Transparency Saves Lives

Here's a wonderful demonstration that the simple fact of transparency can dramatically alter outcomes - and, in this case, save lives:

Outcomes for adult cardiac patients in the UK have improved significantly since publication of information on death rates, research suggests.

The study also found more elderly and high-risk patients were now being treated, despite fears surgeons would not want to take them on.

It is based on analysis of more than 400,000 operations by the Society for Cardiothoracic Surgery.

Fortunately, people are drawing the right conclusions:

Experts said all surgical specialties should now publish data on death rates.

Follow me @glynmoody on Twitter @glynmoody and identi.ca.

Medpedia: Just What the Doctor Ordered

Just because Wikipedia is wonderful (well, mostly) doesn't mean that there's no room for other wikis serving narrower domains. For example, one of the quips that is frequently made as a criticism of the crowd-sourced Wikipedia way is that you wouldn't want the same approach in the operating theatre. Well, maybe not, but this shows how you can usefully apply wikis to medicine:

The Medpedia Project is an extraordinary global effort to collect, organize and make understandable, the world’s best information about health, medicine and the body and make it freely available on the website Medpedia.com. Physicians, health organizations, medical schools, hospitals, health professionals, and dedicated individuals are coming together to build the most comprehensive medical resource in the world that will benefit millions of people every year.

In association with Harvard Medical School, Stanford School of Medicine, Berkeley School of Public Health, University of Michigan Medical School and other leading global health organizations, the Medpedia community seeks to create the most comprehensive and collaborative medical resource in the world. Medpedia will serve as a catalog, database, and learning tool about health, medicine and the body for doctors, scientists, policymakers, students and citizens that will improve medical literacy worldwide.

The key thing here, of course, is that only people who know what they are talking about will be allowed to add content, making it closer to the Citizendium model than Wikipedia (although the latter continues its slow waltz in that general direction too.)

Let's hope that other knowledge domains pick up on the idea: you simply can't have enough of this open content (Medpedia is under the GFDL, like Wikipedia).

How Proprietary Systems Can Kill

Or could do:

The bewildering variety of new medical devices in U.S. hospitals promises higher standards of care. But it also poses new opportunities for error. A growing number of physicians believe that the interoperability of medical devices--their ability to communicate with each other--could make hospitals safer and more efficient.

"Today, there are many proprietary systems available from different vendors, but the problem is, these systems can't talk to one another," says Douglas Rosendale, a surgeon who works on information integration at Veterans Health Administration and Harvard Brigham and Women's Hospital. "If they can't interface, then they can't share information, which could have an impact on patient care." Estimates of the number of preventable deaths caused each year by medical errors in American hospitals range from 98,000 to 195,000.

You know the answer, people: open standards, open source. (Via James Tyrrell.)

WSJ on OA

The message is spreading within the citadel:

Other than in the realm of life-saving medicine, why should any of this matter to nonacademics? Well, for one thing, barriers to the spread of information are bad for capitalism. The dissemination of knowledge is almost as crucial as the production of it for the creation of wealth, and knowledge (like people) can't reproduce in isolation. It's easy to scoff at the rise of Madonna studies and other risible academic excrescences, but a flood of truly important research pours from campuses every day. The infrastructure that produces this work is surely one of America's greatest competitive advantages.

In fact, open access might help to moderate some of the worst forms of academic hokum, if only by holding them up to the light of day -- and perhaps by making taxpayers, parents and college donors more careful about where they send their money. Entering the realm of delirium for a moment, one can even imagine public exposure encouraging professors in the humanities and social sciences to write in plain English.

Keeping knowledge bottled up is also bad for the world's poor; indeed, opening up the research produced on America's campuses via the Internet is probably among the most cost-effective ways of helping underdeveloped countries rise from poverty. Closer to home, open access to scholarly work via the Internet would help counteract the plague of plagiarism that the Internet itself has abetted. Anyone suspecting a scholar of such chicanery could search for a phrase or two in Google and see if somebody else's work turns up with the same unusual text string.

The BMJ Evolves towards... the Dark Side

The British Medical Journal is a fine institution, with a long and glorious history of publishing important medical research. On top of that it was enlightened, allowing mere members of the public (like me) to read all of its content through an open access policy that placed it at the vanguard of scientific publishing.

No more.

An editorial claims that "The BMJ is evolving". As far as I can tell from information on the site (not to mention the sign-in page I meet at the above address), it seems to be evolving in precisely the opposite direction to everyone else, by reducing the amount of its content that is freely available.

More and more scientific journals recognise the virtues of open access, both in terms of efficiency (the dissemination of knowledge and the building of scientists' reputations) and ethics (since the general public pays through taxes for most published research). A full and very clear explanation of both the why and the how of open access can be found here.

Update: Miraculously, the editorial mentioned above now seems to be available to hoi polloi....

Open Beats Patent

One of the themes these postings hope to explore is the way in which openness, in all its forms, can function as an antidote to the worst excesses of the current system of intellectual property. In particular, freely-available knowledge is one way to mitigate the patent system, which has problems all around the world, but is in a particularly flawed state in the US.

As an example, BBC News has an interesting story about how India is creating a database of materials relating to traditional medicine in order to stymie attempts by companies (particularly US ones) to patent this age-old knowledge.

What is particularly galling is that patenting derives its name from the requirement to make a novel and undescribed invention "patent"; but in the case of knowledge that has been available to a society for centuries, the idea that someone (particularly an outsider to this society) who makes something already known "patent" in this way suddenly gains exclusive rights to a hitherto common good is profoundly offensive to anyone with any respect for ethics - or logic.