Personalized Health (PH) is a rapidly evolving field with
significant opportunities for economic development as
well as significant implications to California's healthcare
system. As with any new field, however, there remain
significant unknowns regarding the role that the state
should play in supporting and/or implementing the
growth of the high-tech infrastructure and policies needed
to maximize the potential of personalized health.
CCST has convened a high-level Personalized Health
Information Technology (pHIT) Task Force, which
launched with several months of investigative work by
a steering committee of pHIT Task Force members.
The task force (chaired by Dr. Ramesh Rao, California
Institute for Telecommunications and Information
Technology, UCSD) is charged to propose HIT
infrastructure goals for the state in support of personalized
health. Its charge also includes scoping of a pilot project
involving building a model system incorporating many
sources, types and formats of data including genomic
information, biomarkers, and images through one or more
partners and enabling information exchange through
electronic health records and personal health records
within a private and secure system. The demonstration
pilot study will create a single central database that offers,
in an open electronic format, a comprehensive electronic
record of a subject (patient) that tracks and captures multisourced
data relevant to the health of the individual over
time, while protecting privacy.
Recognizing the business implications to California, both
as home to the emerging industries and the state government as a purchaser of healthcare services, the
Business Transportation and Housing Agency has turned to CCST to help convene key stakeholders from
the public and private sectors to solicit their input. In general, PH refers to the tailoring of medical treatment
to the personal characteristics of each patient. Often this involves the incorporation of genomic information
in an individual's medical record. It does not literally mean the creation of drugs or medical devices that are
uniquely suited to each patient, but rather the ability to classify individuals into subpopulations that differ in
their susceptibility to a particular disease or their response to a specific treatment. Preventive or therapeutic
interventions can then be applied to those who will benefit, sparing expense and side effects for those who will not.
The purpose of the pilot study is to recommend how the state's Business Transportation and Housing
Agency, the Health and Human Services Agency's Health Information Exchange (HIE) workgroups, the
Privacy and Security Advisory Board (PSAB), and the California Public Employees Retirement System
should develop pHIT related policies, and to determine the potential value of pHIT as applied to
personalized healthcare.
CCST has been exploring the potentials and policy implications of HIT for several years. In June 2009,
CCST released a study, Barriers to Financing Clinical Information Systems, which describes current barriers to
financing health information technology as a tool for healthcare delivery. An earlier version of this report
was commissioned by the Governor's Health Information (HITFAC) and submitted to that body in May 2008.
