BIG Health – A Consortium to Realize 21st Century Personalized Medicine

by

Dr. Ken Buetow, BIG Health Catalyst

In the spirit of full disclosure, it is important to let you know, up front – I’m a true believer! I believe, without equivocation, that our individual molecular topography holds the key to understanding disease and driving health. This belief today corresponds to many related health agendas – personalized medicine, molecular medicine, information based medicine. I don’t think it is worth getting hung up on the label.

 

I’ve spent 30 years in the trenches in pursuit of this vision. The seeds of my “faith” were planted when I encountered my first genetics class as an undergraduate. The die was cast for me when I took my senior internship with the Medical Genetics group at Indiana University. This group was making pioneering effort to create a genetic map of human chromosome 1. From the perspective of a completely sequenced human genome, it is difficult to grasp how audacious a goal that was at the time. My first “leap of faith” occurred later that year. I decided to pursue a career in human genetics. A genuinely concerned senior member of the experimental genetics community reacted in horror and told me in no uncertain terms I was throwing away my professional career – “Nothing of importance has ever come from human genetics, nothing ever will…”.

 

It was clear from the onset that the genetic endeavor in humans was very different from other genetics. It required big databases, powerful statistics, and fast computers. It also required a team of scientists from across all of biomedicine. No single individual could assemble the resources necessary to address all the challenges. All the disciplines contributed a novel insight. This was brought home to me as I traveled during my senior internship with a very talented clinician to the homes of study participants identified through his practice, collecting biospecimens for laboratory characterization and collecting family history information for statistical analysis using cutting edge computer technology.

 

The changes in laboratory, statistical, and computer technology that have occurred between that summer and now are breathtaking – cost-efficient, genome-wide genetic characterization, laptop computers with computational capacity that dwarfs the mainframe and mini-computers I used that summer, the internet, the world wide web – WOW! Biomedicine has embraced and exploited them all to give us a remarkable perspective of our molecular landscape. I am always thankful that I grew up with these emerging technologies. I’ve had 30 years to master them as they matured with me. I am amazed that today’s young scientists master these technologies in such short periods of time.

 

One place we have not seen this transformation is in how we as a community conduct biomedicine. We continue to apply existing organizational models. The conduct of studies is as labor intensive as it was 30 years ago. We have used computers to automate old business practices rather than enable completely new approaches. The information from individual health encounters is not accessible to providers or to those developing next generation prevention or treatment strategies. To quote the Secretary of Health and Human Services Michael Leavitt, we have a “health care sector, not a system”.

 

Progress in moving from bench to bedside has always been slower than we “true believers” have hoped and projected. Molecularly-based, personalized medicine is not a reality. We are seeing incremental change occurring by diffusion using tried and true practices that have weathered the test of time. The change will happen we are advised. We are the envy of the world in our US efforts in biomedicine. These things just take time. I am counseled patience.

 

It is hard to be patient. The urgency of the moment is particularly evident in my field, cancer, where over 1.3 million individuals will receive a diagnosis of cancer and over 500,000 will die of this disease this year. We have to try something different!

 

The BIG Health Consortium is that something different. BIG Health’s mission is to

demonstrate – in real settings, in real time – the essential unity of research and care and to model a 21st Century approach to biomedicine, one in which clinical care, clinical research, and scientific discovery are linked to achieve personalized medicine and improved clinical outcomes. It is a new biomedical ecosystem that joins the sectors of biomedicine into a synergistic whole. It leverages information technology as “electronic glue” (the BIG in BIG Health stands for Biomedical Informatics Grid – technology to interconnect the various parts of the biomedical community through semantic interoperable infrastructure).

 

BIG is just the tip of the iceberg. 21st Century medicine requires new organizational approaches that embrace our capacity to work digitally. As Nicholas Negroponte suggests in “Being Digital”, as we transition from atoms to bits the limitations of time and space disappear. Just as technology has permitted us the capacity to look inside a cancer cell, today’s new information technology permits us to reconsider traditional organizational structure and conventions. The BIG Health Consortium will leverage these new approaches as we set out creating our virtual community.

 

The BIG Health Consortium is a coalition of stakeholders who want to create a 21st Century biomedical ecosystem to address the challenges and opportunities of 21st Century personalized medicine. It will be exciting to see what happens when we bring together “true believers” from across all sectors of biomedicine. WATCH THIS SPACE!

One Response to “BIG Health – A Consortium to Realize 21st Century Personalized Medicine”

  1. Ravi Madduri Says:

    Great entry Ken. I will definitely watch this space. Please do let me know if I can be of any use.

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