PABI Plan - The Sarah Jane Brain Project

"To improve the quality of our health care while lowering its cost, we will make the
immediate investments necessary to ensure that, within five years, all of America's medical
records are computerized," President Barack Obama said in a speech on January 8, 2009, at
George Mason University in Fairfax, Va. "This will cut waste, eliminate red tape and reduce
the need to repeat expensive medical tests."
"But it just won't save billions of dollars and thousands of jobs; it will save lives by
reducing the deadly but preventable medical errors that pervade our health-care system,"
he said.
The Open Source Initiative
The Open Source Initiative began with the launch of the Sarah Jane Brain Project in October
2007, when for the first time in medical history all the medical records of an individual were
posted online using open source principals. Sarah Jane Donohue was this first case. The Open
Source Initiative will allow caregivers to opt their children into a first-ever open source database
of neuroinformatics.
The goal of the Open Source Initiative will be to move the field of pediatric neurology 50 years
forward in the next five years by sparking 10,000 PhDs around the world. Whenever someone is
going into the field of medicine, education, public health, they will look around at old, stale data
for their graduate work but then come across this rich database consisting of hundreds of
thousands of medical records in an open source format and decide to choose the field of pediatric
neurology.
The Virtual SJBF Center will not only be used for electronic processes and communication of
electronic medical records, but will also increase other health care informatics such as
telemedicine, consumer health informatics, health knowledge management for professionals,
mHealth and the development of additional Healthcare Information Systems. The development
of a PA/TBI-specific Chronic Disease Management System (CDMS) will allow health care
providers to electronically capture and track specific processes and outcome indicators related to
the child/young adult’s care. This PA/TBI CDMS will be capable of providing reminders,
generating patient-specific reports, create motivation for self-management as well as track
performances and measure effectiveness of treatments.
The SJBP recognizes that many factors outside of the medical record are important to the wellbeing
of the patient. Social issues, financial issues, educational barriers and access to resources
are but a few of the factors that will be incorporated into the information pool. Patients care less
about healthcare records, and more about well-being. The SJBP will provide the PA/TBI
community an ecosystem encompassing all factors important to their well-being.
The Virtual SJBF Center will have customized entry points for patients, their families, clinicians
and researchers. All of these users can enter specifically relevant data. For example, a patient
or guardian may enter information about the patient’s daily routine and self-reported symptoms.
A healthcare provider may enter data about clinical interventions and results. A researcher may
aggregate and analyze the data for new information, or may identify a novel approach to care for
further research. If they desire, any or all of these groups may participate in conversations
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