The Patient Centered Outcomes Research Institute (PCORI) has given nearly $300 million away to groups that are conducting research that is less then, shall we say, transformational.. Most of the money is going to comparaative effectiveness research that pays lip service to differences in individuals when in fact it is just coming up with one size fits all comparisions with a bit of control for age, gender, ethnicity, disease stage. For instance, PCORI is funding a study http://Which Medicine Is Best for Children with Epilepsy? Really? Drug A over Drug B or Drug C?
PCORI is funding mainframe medicine when cloud=based, crowd sourced technologies that integrate genomics, systems biology and patient provided data to match people to treatments. It is investing heavily in PROMIS and it's own CER research network.. both are based on technologies and natural language processing algorithms that are old, clunky and barely accessible to patients.
The new Congress has just launched a 21st century cures initiative. A close look at the legislation and it's goals suggest that PCORI is ill-suited to the goal of using 21st century bioinformatics to increase the role and power patients have over access to new treatments. PCORI is funding yesterday's research methods.
Congress should hold oversight hearing on PCORI and ask some hard questions about it's research focus. It doesn't have to exist at all or in it's current form. Indeed, the money from PCORI and other stand alone pots of money could be integrated into a public-private venture to support biomarker development and precisiono medicine that the legislation calls for.
PCORI had better show it's ready to shift it's gears and mission if it wants to survive.
PCORI is funding mainframe medicine when cloud=based, crowd sourced technologies that integrate genomics, systems biology and patient provided data to match people to treatments. It is investing heavily in PROMIS and it's own CER research network.. both are based on technologies and natural language processing algorithms that are old, clunky and barely accessible to patients.
The new Congress has just launched a 21st century cures initiative. A close look at the legislation and it's goals suggest that PCORI is ill-suited to the goal of using 21st century bioinformatics to increase the role and power patients have over access to new treatments. PCORI is funding yesterday's research methods.
Congress should hold oversight hearing on PCORI and ask some hard questions about it's research focus. It doesn't have to exist at all or in it's current form. Indeed, the money from PCORI and other stand alone pots of money could be integrated into a public-private venture to support biomarker development and precisiono medicine that the legislation calls for.
PCORI had better show it's ready to shift it's gears and mission if it wants to survive.
