Tapping into the Power to Share

For those of us who don’t venture into the laboratories of science, it’s difficult to appreciate how fragmented, proprietary and inefficient drug and disease research truly is. At a time when the Internet is making it easier than ever to share and collaborate, some of the most well-funded, high-tech scientific projects today still operate in their own isolated silos. They are effectively cut off from vast quantities of potentially useful research, scientific literature, emerging ideas and potential collaborators.

As Marty Tenenbaum and John Wilbanks put it, the current system is plagued by “debilitating delays, legal wrangling and technical incompatibilities that frustrate scientific collaboration…. Biomedical knowledge is exploding, and yet the system to capture that knowledge and translate it into saving human lives still relies on an antiquated and risky strategy of focusing the vast resources of a few pharmaceutical companies on just a handful of disease targets.”

Tenenbaum and Wilbanks are two of the champions behind an ambitious new project, Health Commons, which aspires to build a new ecosystem for scientific research.

Even though huge advances have been made in decoding genes, it takes 17 years to go from gene to cure. Scientists and their institutions send too much time with lawyers, negotiating how to retain control over their work, and too much time doing research that someone else had already figured out was a dead-end. What if researchers could more easily pool their research data, share their tissue specimens, and use computers to search more efficiently through the journals in adjacent fields of research? What is there were a much larger, open platform for collaboration?

Health Commons is a new spinoff of Science Commons, which itself was spawned by Creative Commons in 2005. Health Commons aims to re-imagine and reinvent the ways in which health scientists carry out their work. John Wilbanks, vice president for science at Creative Commons, and Marty Tenenbaum, an Internet commerce pioneer who founded CommerceNet and CollabRx, lay out the case for Health Commons in an excellent paper, “Therapy Development in a Networked World,” You can also watch a six-minute video explaining Health Commons here. The project is a partnership among Science Commons, CommerceNet, CollabRx and Public Library of Science.

A key goal of Health Commons is to establish “a collaborative ecosystem of knowledge and research services that can be rapidly assembled to develop new therapies with unprecedented efficiencies and economies of scale.” Although Tenenbaum and Wilbanks do not allude to Wikipedia, free/open source software and social networking websites, Health Commons clearly has in mind exploiting the same kinds of “value-creation” that occur on open platforms. This would be a stark contrast to, and huge advance over, the stodgy, conventional ways that scientists tend to work.

Getting science to exploit the Web’s potential is more difficult than the “Social Web,” however, because science can’t just look to the “wisdom of crowds” or “smart mobs.” It has developed some elaborate systems of hierarchical, highly specialized knowledge, and so the Web platforms must take account of these realities, discipline by discipline. Here is how Tenenbaum and Wilbanks envision the operation of Health Commons:

Health Commons is a coalition of parties interested in changing the way basic science is translated into the understanding and improvement of human health. Coalition members agree to share data, knowledge, and services under standardized terms and conditions by committing to a set of common technologies, digital information standards, research materials, contracts, workflows, and software. These commitments ensure that knowledge, data, materials and tools can move seamlessly from partner to partner across the entire drug discovery chain. They enable participants to offer standardized services, ranging from simple molecular assays to complex drug synthesis solutions, that others can discover in directories and integrate into their own processes to expedite development – or assemble like LEGO blocks to create new services.

So, for example, participants in Health Commons would agree to standardized legal contracts and pre-negotiated licenses that will make it easier to access and share data, knowledge and physical materials. They would adapt their research to a “uniform platform architecture” so that scientists could readily share their private information and resources — “initially to one’s lab, then to collaborators, and ultimately to the greater research community.” Scientists would agree to use common digital information standards so that different databases, for example, could share datasets.

Over time, Tenenbaum and Wilbanks hope to change the very business models for developing new therapies. Instead of everyone working on their own, on in short-term, ad hoc partnerships, collaboration would be the rule until it became clear that there was something of potential value to commercialize. At that point, participants could negotiate their proprietary interests.

No one in the fashion industry owns the color pink or the pleated trouser — and yet everyone can still assert a proprietary interest (through trademarks of their brand name and logo) and make money. So, in science, it would be far more sense to exploit the radical efficiencies and economies of scale of “an ecosystem of shared knowledge,” and then develop new sorts of business models “on top” of that ecosystem. The music industry is itself undergoing an analogous transition right now, as it discovers that “owning the music” is a losing proposition for the industry . It can thwart the development of a more robust creative ecosystem and hardier business models.

The vision that Tenenbaum and Wilbanks sketch is particularly exciting in how it might transform research funding. “Some 2,500 foundations invest hundreds of billions annually seeking cures to hundreds of diseases,” they write, “yet there is little coordination, resource sharing or cross-learning among initiatives and no effective processes for moving research into the clinic.” Similarly, the current system makes it too costly and complex to do research on more than 5,000 rare, orphan and neglected tropical diseases. The new Health Commons could help ameliorate both of these structural flaws in health research.

If there is one problem that I have with the Health Commons, it is its unexamined assumption of health as an object of technological solutions — pills, treatments, expert-driven interventions. We surely need these approaches; they can do a world of good. But it would be a shame if the Health Commons’ vision of health as something that is delivered through scientists and drug companies were to eclipse the social dimensions of health and well-being. Besides better, faster, cheaper research, we also need a health commons that reintegrates human beings into communities of meaning and support. It hardly needs adding that we could also use a “health insurance commons” that can socialize the risks of disease and injury, much as Social Security socializes the risks of old age and disability. I’d be happier if the new project were called the “Health Research Commons.”

This is a quibble. The Health Commons is attempting something extraordinarily significant and transformative. It will be fascinating to watch the evolution of this ambitious project in the coming months and years.