PABI Plan - The Sarah Jane Brain Project

Chapter 9: Category of Care: The Virtual SJBF Center - An Ecosystem for the PA/TBI
Community
Scientific methods and data analyses are the cornerstones of medical research and care. In the
traditional model, there is a hypothesis, a question: “If I do this, will the patient benefit?”
However, most projects are often done in isolation and typically centered on a particular
researcher’s practice. At times, researchers collaborate in hopes of increasing the number of
patients to find answers sooner.
In many ways, research reflects clinical medical practice. Although the public believes there is a
free exchange of ideas and best practice technique, typically individual practices are relatively
isolated. Treatment choices may be based on geography and what the caregiver is most familiar
with, rather than best practice standards, or outcome-based choices.
The advent of the Internet offers a new model, one allowing active patient and caregiver
collaboration. There are three initial phases to the Virtual SJBF Center:
Phase 1: The SJBF Registry
Phase 2: The Electronic Health Records Portal
Phase 3: The Open Source Initiative
The Virtual SJBF Center will also use additional technologies to advance the continuum of care
for children/young adults and their families.
The SJBF Registry
While protecting patient rights, the Virtual SJBF Center will provide an open registry for
everyone with a PA/TBI and their families. This methodology (Communities for a Cure) has
been extensively used for the last 8 years for other disease states and will now be made available
to the PA/TBI community. The SJBF Registry will apply the best informatics management
approach, used successfully with Multiple Sclerosis and Parkinson’s disease for more than a
decade at the Barrow Neurological Institute (BNI) in Phoenix. Outcomes assessment, education
and other technologies will be available through the registry.
The model has three simple steps: enrollment, engagement, and repeated communication.
1. Enrollment: Patients are enrolled in the SJBF Registry - this can occur either at the time
of the acute event or afterwards. The patient or a caregiver can enroll the patient by
providing information about the event, age of the patient, clinical evaluation at the time,
etc. In most cases, the patient’s name is recorded, but this is not necessary. A form of
communication is included (email, US mail, text messaging, phone number). In the case
of the SJBP, information will also be gathered from the family members whenever
possible.
2. Engagement: Personalized content can then be provided to the patient and their family,
helping them better understand their condition and how to get help. This differs from
typical, unfiltered Internet content. Over time, the SJBP will continue to add research
and services partners to the registry, similar to the Apple applications store for the
iPhone.
3. Communication: There will be repeated communication with the participants, a
relationship rather than a limited engagement. Participants will be sent questionnaires at
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