policy

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 more…] about PABI Plan: Rein­vent­ing Brain Care Through Pol­i­cy, Stan­dards, Tech, Neuroinformatics