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IT-Enabled Personalized Medicine

Personalized medicine proponents discuss what wisdom health-IT brings to the movement.

By Allison Proffitt

January 20, 2009 | BOSTON—Personalized medicine can learn a lot from health-IT, said David Brailer at the annual Harvard Partners Personalized Medicine conference. Brailer, the former HHS “health czar,” proposed that health-IT is about five years ahead of personalized medicine politically and culturally, and that the head start offers wisdom for personalized medicine.

Brailer said personalized medicine proponents need to recognize that the full value will not initially be understood by everyone, certainly not the public. The health-IT movement had to educate experts to communicate with the public. “We viewed health-IT as a campaign,” Brailer said. Just as his staff campaigned to Congressmen, governors, and anyone that would listen, so he believes “personalized medicine needs that level of a war waged. It’s not going to drift into the American consciousness.”

Brailer also laid the burden to prove superiority on the innovator. Early health-IT efforts asked to be proven wrong, and that doesn’t work, he said. The benefits of personalized medicine must be shown in the real world and enthusiasts must show that it saves more money than it costs. Health-IT had to prove long term benefits in concrete amounts, and personalized medicine must do the same.

Finally, Brailer told the audience that they had to show doctors how personalized medicine would work for them in their clinics and hospitals. Just like training physicians to use an EMR, doctors will need to be helped through the change, and shown how to implement personalized medicine in their daily practice.

Vendor Perspective

Rising to Brailer’s challenge, a roundtable of IT vendors discussed the solutions required to enable personalized medicine. Translating data into knowledge is daunting, and vendors must craft a toolkit to serve personalized medicine’s needs, said Eiry Roberts, VP transitional phase development, Eli Lilly.

Neil de Crescenzo, senior VP and general manager, health care and life sciences, Oracle, said his priority is to advance open IT standards and speed the ability to search images. In the company’s new 12G platform, it has presented DNA as a data type, and he hopes that will speed personalized medicine research.

Janet Dillione, CEO, health services, Siemens Medical Solutions, pointed out that IT vendors don’t own the data. Medical knowledge has to be in the public domain. The semantic web will help link patient, genomic, and medical data, and service oriented architecture will be essential to managing the data volume and advancing personalized medicine.

Lionel Binns, business development executive, health and life science, Hewlett-Packard, said that the main lesson for health-IT is to stay simple. IT can’t lead the campaign into personalized medicine, it can only provide tools, and they should be not bigger, faster, and better, but smarter, cleverer, and simpler.

Frederick Lee, product manager for personalized medicine and genomics for McKesson agreed. IT has to take a long view of the development, he said. The infrastructure has to be in place before personalized medicine can really take off. Lee compared personalized medicine to the early automotive industry. After all, there couldn’t be an explosion in car sales until there were roads and fueling stations.

Managing the Data

Linda Avey, co-founder 23andMe, liked the automotive analogy. Representing consumer genomics offerings, Avey and colleagues gave their “wish lists” for IT support for personalized genomics and personalized medicine.

Avey said that Illumina is the road and LabCorp the fueling station for 23andMe. Right now we are a Prius, she joked, but hope to become a semi full of data heading to the hospital. Avey encouraged providers to make their electronic medical records compatible with personal health records such as the offerings from Google and Microsoft to allow patients to transfer genomic data to their providers.

Dietrich Stephan, CSO Navigenics, imagined a “magical algorithm” would take into account all of the genetics as well as the temporal exposures of an individual and print out a report, but until then, Stephan believes we must still do reasonable risk assessments with known risk factors and focus on better communication of those assessments and better clinical-decision support for doctors.

David King, CEO of LabCorp welcomes the fueling station comparison and notes that there’s an important difference between well-known and well-validated results. Validation of results, analyses, and even the sources that interpret the data is essential to successfully applying genomics data to health.

Jorge Conde, CEO of Knome noted there isn’t a central database of genomics data. The cost of sequencing is falling quickly, but understanding the data isn’t progressing as rapidly, and tools to understand the data should be a priority. 

This article also appeared in the Jan-Feb 2009 issue of Bio-IT World Magazine.
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