INSIGHTS from Pistoia Alliance

In Part I of this series, Sean Ekins outlined the need for a way to share data about rare and neglected research. This need inspired the Open Drug Discovery Teams (ODDT) mobile app, developed for the Dragons’ Den session at the Pistoia F2F meeting in February and launched on the Apple app store in April 2012. The full evolution of ODDT is chronicled on my blog. In this entry, I invited Sean to discuss how the app works. The work on ODDT demonstrates the importance of the Pistoia Alliance’s new appification strategy, which aims to make informatics tools accessible to scientists and the broader community interested in using mobile devices to conduct and communicate about science.

Sean Ekins

Recognizing that parent-led disease organizations like Jonahsjustbegun.org and  Hannahshopefund.org use Twitter and actively blog to promote the study of their children’s diseases, the ODDT app tracks Twitter hashtags and Google Alerts corresponding to certain diseases and aggregates links to articles and other information under topic headings. The app is chemistry aware, enabling scientists to tweet molecules they are making, want to share with others, or need to find. Structure-activity data can also be shared in the app, giving motivated citizen scientists, such as parents and patients, who want to learn about scientific software the opportunity to work with tools similar to those used in larger research organizations. All information aggregated by ODDT is crowd curated; users can endorse or disapprove links to improve both the quantity and quality of the data reported in the app.

ODDT helps parent-led organizations highlight their causes and endorse content relevant to their communities, ensuring rapid and more substantive conversations that can lead to more effective collaboration. In the process of developing and communicating ODDT, we have actively raised the profile of these diseases, bringing them to the attention of thousands of people through mentions on blogs, in papers, posters, and oral presentations, and even through an IndieGoGo crowdfunding campaign.  We are only at the beginning of what we could achieve with the rare and neglected disease communities.

ODDT has also demonstrated the need to supplement the academic publication system, which locks most important discoveries behind paywalls. By having access to raw data in a readily usable form, anyone can easily incorporate the data into their own projects and avoid unnecessary duplication of effort. It also brings a benefit to scientists, as a parent or patient may see the research and offer to fund it or assist in its commercialization.

ODDT capitalizes on the shift towards low-cost, consumer-friendly apps and serves as a flagship effort to bring together professional scientists, charitable foundations, and concerned citizens in an open context that breaks down institutional or geographic barriers. ODDT illustrates how the Pistoia Alliance can help inspire the development of a new mobile app and jumpstart connections between communities. It’s the basis of our developing app strategy. The strategy and the store will provide way for customers and developers to generate additional new scientific apps. In the case of ODDT, exposing the app in the Pistoia Alliance app store would show organizations a pilot of what could be developed into a commercial product organizations to mix private documents with external data. This could result in a mobile, cloud-based complement to existing chemical databases that could spur ideas for future discovery programs.

In the interest of full disclosure, Sean donates time to Phoenix Nest, BioGan, Jonasjustbegun.org, and Hannahshopefund.org. These and many other rare disease groups could benefit from your support.

One of the great things about mobile apps is that they are low-profile, easy-to-adopt tools that theoretically could remove traditional barriers between information sources. In fact, as I discussed in my last entries, they have the potential to create a whole new ecosystem of information and users. Nowhere is this more evident, or more important, than in the area of rare and neglected disease research, where disparate (and often desperate) information seekers need better ways to access and share information. I’ve invited Pistoia Alliance board member Sean Ekins to talk about the Open Drug Discovery Teams (ODDT) app we developed together as a “skunk works project” for the Dragons’ Den session at the Pistoia Alliance F2F meeting in February 2012. The app has come a long way since that initial presentation—but more on that in Part 2.

Sean Ekins

Today we are seeing parents becoming bona fide world experts in rare diseases out of necessity, as they form foundations and companies to fund research to help their sick children. Take Jill Wood, who founded Jonahsjustbegun.org when her son was diagnosed with Sanfilippo Syndrome, or Lori Sames, who founded Hannahshopefund.org to promote study on her daughter’s disease, giant axonal neuropathy.  There are many others. Organizations like these don’t have the scale of the NIH, the Bill and Melinda Gates Foundation, or the Michael J. Fox Foundation. But they are virtual pharmas—and they are highly motivated to find cures. What they lack is a way to rapidly access, gather, and share information on disease research that may be occurring anywhere globally. What if we could help these parents and the researchers working on rare diseases work more collaboratively, as Alex Mackenzie and co-authors recently suggested?

At the opposite end of the spectrum are diseases such a tuberculosis and malaria that affect millions rather than the one in a million suffering from a given rare diease. Despite their prevalence and the considerable amount of funding they can receive, these diseases are often classed as neglected because progress is slow, not well coordinated, and rarely utilizes informatics, computational tools, and other technologies to capitalize on knowledge accumulated globally.

In both of these cases, information exists. Research is occurring somewhere, but it’s occurring in a vacuum. The challenge is how to connect the right people to the right information at the right time so that they can share, partner, and collaborate. A few pioneering open notebooks scientists have explored ways to make science more open. Mat Todd at the University of Sydney, for instance, uses his blog as a window into his ongoing research, and many scientists have taken to tweeting discoveries to their contacts. But such efforts are still akin to shouting on a street corner. How can we boost the signal to connect those doing the shouting with those who most want to listen, wherever they are in the world?

In our next entry, we will describe the genesis of the ODDT app (developed jointly by Collaborations in Chemistry and Molecular Materials Informatics) and its impact on rare and neglected disease research.

In the interest of full disclosure, Sean donates time to Phoenix Nest, BioGan, Jonasjustbegun.org, and Hannahshopefund.org. These and many other rare disease groups could benefit from your support.