Building An Open Clinical Intelligence Network 22

“Drug development processes must improve, and… open innovation methods can be used to make clinical development better and faster.”  These convictions are from our White Paper and express what drives the Lilly COI team.

But the processes will not improve without some necessary changes.  We believe that to make clinical development better and faster means allowing people around the world to contribute to clinical research.  To facilitate those contributions, clinical research data must be made accessible, consumable and useful.  To ultimately make life better for patients, the improvements we envision include two essentials: “webified data and motivated people.”

As you read this, you might be thinking that clinical data have been online for years, and that there are repositories and archives that people can access.  And you likely know more than a few people who have made it their personal goal to find ways to defeat or diminish the effects of disease, or to bring relief to those who suffer.  There are indeed plenty of motivated people, but they are often frustrated in the process.  Their motivation is not always rewarded with seamless, practical access to crucial data.

Their heroic efforts should be rewarded, and the Lilly COI team believes there are ways to “turn on a generative knowledge system for clinical development” that amplifies both the work and the passion of those motivated to make clinical development better.  Truly “webified” data and truly motivated people can come alive within a construct that we call The 4C Model.

The 4C Model

The 4 Cs, collect, consume, curate, and connect, rely on innate qualities of the internet to bring dynamic life and value to clinical research.  The 4 Cs form an interactive, generative system which can only be fueled by the internet with its open structure, its community of people, and their immense knowledge.

COLLECT

Yes, clinical research data have been online for years, but much of this information is very hard to find, even harder to read or summarize, and nearly impossible to share, compare, or comment on.  To collect public clinical research data means to make it easier to find, consume, and work with on the web.  Clinical trials need to be as approachable and accessible as consumer products are in the most popular online stores.  The “webification” of clinical data starts with collecting it, making it accessible and easy to use through standard formats and interfaces.

CONSUME

Clinical trials are rife with discoveries, ideas, concepts and assertions.  To consume clinical research data is to explore and interact in meaningful ways with those discoveries.  Web applications and tools need to be in place to help anyone with an interest and an internet connection to navigate, filter, read, view, listen to, sort, share and compare their findings.

CURATE

Museum curators are people with specific knowledge who acquire and analyze, sort, annotate, organize and create exhibitions for public viewing.

We imagine an open network of clinical curators, providing additive value to data and sharing their clinical exhibits.  But they will need reliable tools to enable them to do so.  And not unlike an open resource like Wikipedia, others will be able to constantly improve the knowledge through commentary, correction, and completion enabled through Creative Commons public domain licensing.

CONNECT

None of the 4 Cs’ knowledge-generation activities can occur without the phenomenal connection tool that is the internet.  In recent years, as social networking tools and applications have made the consumption, collection, and curation processes ubiquitous, we anticipate astronomical growth in the ability of the clinical crowd to connect and share vital, life-changing information.  Dynamic connectivity among collections, tools, applications and exhibits helps to generate knowledge and accelerates innovation.

By applying the 4C model to clinical research, we are creating an online environment where any motivated person can advance clinical research, combat disease, help find a cure and make patient’s lives better.

CLINICAL COLLECTIONS IS AN EXAMPLE

Our Clinical Collections tool delivers value through the 4C model.  Open Data is Collected from clinicaltrials.gov and is Consumed through multiple, unique views (e.g. outcomes, timeline, map).  You can search and filter trials based on individual needs, as you Curate and save your collection.  When you share your collection you Connect with others and can build additional knowledge.

WE’RE JUST GETTING STARTED

Clinical Collections is our first tool, and we’ll be providing additional capabilities, tools and technology to enable an Open Clinical Intelligence Network through the 4C model – all freely accessible, open sourced and Creative Commons licensed.  Stay tuned, and please join us in the journey.

22 comments

  1. Thanks for the comment, and I’m glad to hear this resonates. I’d love to know more about what you and Attensa are up to. Sounds like we should chat?

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  3. I love the 4 Cs. Do you all have a roadmap for other tools you plan to work on? You might be interested to learn about some of the open tools and public data repositiories we are building at the Personal Genome Project.

    Check out our public users database, with integrated genetic, environmental and trait data:
    https://my.personalgenomes.org/users

    …and our open curation tools for public genomes:
    http://evidence.personalgenomes.org/genomes

    A wonderful ecosystem is growing up around this endeavor and those like it. Each year we showcase them at the Genomes, Environments and Traits (GET) Conference on World DNA Day (April 25). We just held one at Harvard Medical School. Our next conference will be in Boston April 25-26, 2013:

    http://www.getconference.org

    Give me a shout Jason [put at here] PersonalGenomes.org

    Best wishes,
    Jason

  4. Jason – thanks much for comment and yes, let’s talk! We are building out our roadmap (and will be exposing it as we go through open technology, data and architecture discussions) and would really value a conversation to both understand the datsets/tools being made available around the Personal Genome project as well as mind meld about around thinking, direction and potential opportunites. I’ll reach out as you suggest…thanks again!

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