2014 Annual Health Policy Invitational Meeting

Harnessing Next-Generation Informatics for Personalizing Medicine

AMIA 2014 Policy Invitational - Personalizing Medicine from AMIA on Vimeo.

Meeting Chair: Peter Tarczy-Hornoch, MD, FACMI, University of Washington

Purpose

To recommend updates to current policies and to establish a research agenda for the informatics challenges due to changes in our approach to care delivery -- especially as they relate to personalizing medicine through the mining of data from clinical systems (e.g., electronic health records and administrative) and high-volume molecular data (e.g., genomic data and biomarkers) to customize care, target drug development, and ultimately make healthcare more efficient and effective.

Focus and Objectives

The focus of the AMIA 2014 policy invitational meeting will be centered on the informatics opportunities and challenges around personalizing medicine, with an emphasis on areas that are impacted by policy, and policy gaps -- particularly federal laws and regulations. For the purposes of this meeting, we are adapting the Stephen Pauker definition[1] of personalized medicine:

Personalized medicine is the practice of clinical decision-making such that the decisions made maximize the outcomes that the patient most cares about and minimizes those that the patient fears the most, on the basis of as much knowledge about the individual's state as is available.

Zak Kohane, in his commentary in Genome Medicine, posits the definition as twin questions of “who are you and who do you most resemble?”[2] More narrowly, “the phrase ‘personalized medicine’ is commonly used to refer to genomic medicine, defined as ‘the use of information from genomes (from humans and other organisms) and their derivatives (RNA, proteins and metabolites) to guide medical decision-making.’[3] Personalized medicine, however, may be defined more broadly to be a model of healthcare that is predictive, personalized, preventive and participatory (‘P4 Medicine’)[4] and that also applies to technologies to customize and deliver care.”[5], [6] For this policy invitational meeting, we are focusing on personalizing medicine specifically using genomic and other high-volume biomolecular data along with data from clinical systems.

2014 invitees will participate in focused and thought-provoking discussions that will weigh the various factors that impact the formulation of a national policy and research agenda around the role of personalized medicine and health informatics in delivering individualized patient care and advancing translational science.  The meeting agenda will focus on the policies that support informatics innovations to propel and enable personalizing medicine and high levels of public health.

The AMIA 2014 Policy Invitational Meeting will seek to engage elected federal leaders and their staff as they consider crafting legislation that will a support an evolved model of 21st-century drug and treatment development.  Federal leaders have made personalized medicine a priority in their strategic objectives as evidenced by the “21st-Century Cures” initiative announced in April of 2014 by House Energy and Commerce Chairman Rep. Fred Upton (R-MI) and committee member Rep. Diana DeGette (D-CO).[7]

For more information about the AMIA Policy Invitational Meeting, please contact Dr. Ross D. Martin, VP of Policy and Development, at ross@amia.org.

AMIA 2014 Policy Invitational Meeting Planning Committee

Peter Tarczy-Hornoch, MD, Chair, University of Washington
Suzanne Bakken, PhD, Columbia University
Chris Chute, MD, Mayo Clinic
Josh Denny, MD, Vanderbilt University
Robert Freimuth, PhD, Mayo Clinic
Chuck Friedman, PhD, University of Michigan
Rebecca Kush, PhD, Clinical Data Interchange Standards Consortium (CDISC)
Yves Lussier, MD, University of Arizona
Dan Masys, MD, University of Washington
Lucila Ohno-Machado, MD, PhD, UC San Diego
Casey Overby, PhD, University of Maryland
Neil Sarkar, PhD, University of Vermont
Nigam Shah, PhD, Stanford University
Justin Starren, MD, Northwestern University
Jessie Tenenbaum, PhD, Duke University
Marc Williams, MD, Geisinger

Meeting Materials: