Report from AMIA – All Diseases will become Orphan

March 12, 2011

The first speaker I heard at the American Medical Informatics Joint Summit was Kenneth Buetow from the National Cancer Institute. In his typical provocative manner, he challenged the audience on the transition day from the Translational Bioinformatics to the Clinical Research Informatics Summits.  He began with promoting the P4 Medicine as the new model for healthcare: personalized, predictive, preemptive, participatory. Although throughout the conference little was articulated on the participatory aspects with one exception. More on that later.

Buetow talked about defining cancer on the molecular level and the challenge of the exponential number of patients required to do genetic screening for a single disease. He referred to Pharma 3.0 from the Ernst and Young report on Progressions 2011 where patient engagement through social media as necessary in this new age of medicine. It is here that he stated, “All diseases will become orphans” meaning that as we understand more about genomics and are able to combine these findings with clinical data, we will understand each disease process on a truly personalized level and hopefully treat it as such.

As part of Pharma 3.0 and a new model for medicine, he did note some encouraging trends in volunteers for clinical trials, true patient activism in a full participatory sense. Specifically, he reported some recent statistics from Army of Women, a joint project of Avon and Susan Love to recruit an army of those willing to volunteer for research studies. Rapid recruitment occurred consistently for studies through this resource while traditional clinical trials continue to suffer from lack of full enrollment.  He also referred to adaptive clinical trials as part of this new model. Finally, he discussed the Translatable Informatics Ecosystem as a way of describing how informatics will be key in this new paradigm using Services-Aware Interoperability Framework (SAIF) as one technology to reach that goal.

Many of the presentations at this year’s conference were focussed on data warehouses of clinical and genomic data and ontology development and application include many efforts in the semantic space.

Several speakers referred to Evidence Based Medicine, Personalized Medicine and the Learning Healthcare System implying if not explicitly stating that there is a convergence of the future of medicine and that medical informatics and clinical research informatics are at the center of this convergence. Bill Hersch, noting the explosion of data both in journals and through EHRs and others sources,  citing  Stead on the need for “Systems of Brains” to manage the amount of information now available

All agreed that Medical Informatics is at a crossroads and has the opportunity to take leadership in the future of medicine, managing the data explosion and making it managable in the personalized medicine era we are entering.

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One Response to “Report from AMIA – All Diseases will become Orphan”

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