Today, in honor of both Brain Aware­ness Week (March 15–21) and Brain Injury Aware­ness Month (March), it is my plea­sure to inter­view Patrick Dono­hue, founder of the Sarah Jane Brain Project, a foun­da­tion launched in 2007 with the explicit aim to cre­ate a model sys­tem for chil­dren suf­fer­ing from all Pedi­atric Acquired Brain Injuries, and an implicit poten­tial, in my view, to fun­da­men­tally trans­form med­ical research through the use of neu­roin­for­mat­ics and stan­darized sys­tems of care.

The Foun­da­tion: Story and Objectives

Alvaro Fer­nan­dez: Patrick, thank you very much for your time today. Can you please pro­vide an over­all per­spec­tive into what you are doing and why?

Patrick: Of course. The Sarah Jane Brain Project, named after my daugh­ter Sarah Jane, started when she was shaken by her baby nurse when she was 5 days of age, which resulted in a severe brain injury. Through my con­tin­ued efforts to help her, I couldn’t help but notice that the whole field of brain injury needs to make huge progress in a short time frame if it is to really help Sarah Jane — and thou­sands of chil­dren like her — with pro­vid­ing evidence-based, stan­dard­ized sys­tems of care. Prob­a­bly 85% of patient needs are com­mon, yet each case seems to require rein­vent­ing the wheel. Worse, lit­tle research has been done on children’s rehabilitation.

We prob­a­bly know about 5% of what we will even­tu­ally know about the brain. The sys­tems of research and care remind me of the com­puter sci­ence field in the 1950s: very promis­ing, but frac­tured and incon­sis­tent. In con­sult­ing with many experts on ways to accel­er­ate progress, we real­ized we need to bring both sig­nif­i­cantly more resources and open source prin­ci­ples to the field of pedi­atric neu­rol­ogy. We launched the Sarah Jane Brain Project to trans­form the field to help Sarah Jane and thou­sands of kids like her.

Before you launched the Foun­da­tion, you worked as a lawyer and polit­i­cal con­sul­tant. How did that back­ground help, or hin­der, those very ambi­tious goals?

I believe my back­ground was a great help, to bring an out­side per­spec­tive to the prob­lems that many sci­en­tists and doc­tors were already work­ing on, and to know how to work with politi­cians and policy-makers to obtain needed atten­tion and resources.

Pedi­atric Trau­matic Brain Injury (PTBI) is the lead­ing cause of death and dis­abil­ity for chil­dren and young adults from birth through 25 years of age in the United States, with more new cases in any given year than HIV/AIDS and Autism com­bined, yet it only receives a paultry por­tion of fed­eral research money (we are talk­ing a few mil­lion for brain injury vs, lit­er­ally, bil­lions toward other dis­ease states that have less cases), and it was basi­cally ignored dur­ing the ongo­ing health reform process.

Talk­ing to dozens of experts, I met mul­ti­ple net­works and indi­vid­u­als in the TBI care com­mu­nity who had already iden­ti­fied the need to develop a solid pedi­atric model sys­tem, but needed sup­port and resources. We brain­stormed poten­tial strate­gies, and came to see that we would need to cover all Acquired Brain Injury (includ­ing both trau­matic and not trau­matic causes), to increase learn­ing, and to truly be, as I often say, “on the side of the angels” (I have wit­nessed before how move­ments fail when they start to become myopic and arbi­trary). We also decided to cover birth to 25 years of age, given the slow mat­u­ra­tion of the frontal lobes. We wanted to develop best plan pos­si­ble, irre­spec­tive of sta­tus quo con­sid­er­a­tions. For exam­ple, we con­sciously decided not to tai­lor our plan to the idio­syn­cratic pref­er­ences of dif­fer­ent fund­ing sources, but to present the National PABI Plan, a large, and unso­licited, multi-department grant that crossed 7 departments.

Polit­i­cal ears respond to vic­tims’ sto­ries, and to budget-neutral plans. Our con­cur­rent res­o­lu­tion of Con­gress (H.Con.Res.198) has over 100 co-sponsors in the U.S. House. This mea­sure has the United States Con­gress endors­ing this National PABI Plan as the plan to pre­vent, iden­tify and treat all brain injuries from birth through 25 years of age while encour­ag­ing fed­eral, state and local gov­ern­ments to begin imple­ment­ing it. We expect it to pass very soon.

Pol­icy Inno­va­tion at Fed­eral and State Lev­els

Please explain the ori­gins and core ele­ments of the PABI Plan (opens 500+ PDF document)

Our National Advi­sory Board gath­ered in New York City for a three-day con­fer­ence on Jan­u­ary 8–10, 2009, to fin­ish draft­ing the PABI Plan. On Jan­u­ary 20, 2009, we sent the first let­ter to Pres­i­dent Barack Obama at 12:01 p.m. intro­duc­ing the PABI Plan to him.

At its core, the PABI plan wants to fund and imple­ment a new model sys­tem, using open source infor­mat­ics for the first time in med­ical his­tory, to assist in the study and reha­bil­i­ta­tion of chil­dren suf­fer­ing from Pedi­atric Acquired Brain Injury (PABI). Fam­i­lies will be able to make avail­able, on an anony­mous basis, the com­plete med­ical and ther­apy records and infor­ma­tion of chil­dren suf­fer­ing from PABI to doc­tors, researchers, other par­ents and care­givers, ther­a­pists, stu­dents and the gen­eral public.

Our part­ners in this are 52 State Lead Cen­ters that will focus on devel­op­ing evidence-based stan­darized sys­tem of care across 7 cat­e­gories of care. They will develop Read the rest of this entry »