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PABI Plan: Reinventing Brain Care Through Policy, Standards, Tech, Neuroinformatics

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, tdy_robach_shakenbaby_081114.300w 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 imagesBoard 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 research plans, pri­or­i­tiz­ing key trans­la­tion­al points, to help us accu­mu­late the equiv­a­lent of 50 years of knowl­edge in just 5 years. That is our goal.

One impor­tant com­po­nent of the plan was to ensure all this infra­struc­ture became self-sus­tain­ing over time. Long term rev­enue streams will come from: a) a per­cent­age of speed tick­ets will be devot­ed to research, and matched by pri­vate donors, b) our own Con­tract Research Orga­ni­za­tion, that will enable faster research giv­en data avail­able in the data­base, and c) legal advo­ca­cy efforts, that will redi­rect 25% of the refer­al fees to pro­vide the resources nec­es­sary to sub­si­dize these efforts for those fam­i­lies who need addi­tion­al sup­port.

Your Foun­da­tion and the ACSM announced a new ini­tia­tive dur­ing the Super Bowl. What are the goals of the Zack­ery Lyst­edt Brain Project?

Zack­ery Lyst­edt sus­tained a seri­ous brain injury in 2006 play­ing foot­ball, which inspired two years of hard work by his fam­i­ly and col­leagues at Brain Injury Asso­ci­a­tion of Wash­ing­tonLystedt to devel­op and pass the Zack­ery Lyst­edt Law in Wash­ing­ton State and pre­vent sim­i­lar cas­es from hap­pen­ing. This was a bril­liant law, the first con­cus­sion-spe­cif­ic laws cov­er­ing all youth sports, and a bud­get-neu­tral one since it just requires addi­tion­al info through exist­ing mech­a­nisms: 1) addi­tion­al edu­ca­tion for coach­es to under­stand risks, 2) imme­di­ate removal from play of any ath­lete sus­pect­ed of a con­cus­sion and 3) prop­er med­ical eval­u­a­tion before a “back-to-play” deci­sion.

Once we saw that law pass unan­i­mous­ly, the Amer­i­can Col­lege of Sports Med­i­cine and the Sarah Jane Brain Foun­da­tion decid­ed to part­ner to help oth­er states to repli­cate that law. We may well get 24 states pass­ing the laws or mak­ing seri­ous head­way this year.

The Roles of Tech­nol­o­gy and Phi­los­o­phy

Tech­nol­o­gy seems an impor­tant enabler both of the PABI Plan ‑to store and mine the data­base, to devel­op and mea­sure inter­ven­tions- and the Zack­ery Lyst­edt Law ‑for exam­ple, more and more sports teams are using auto­mat­ed cog­ni­tive assess­ments to inform back-to-play deci­sions. What are your pri­or­i­ties now?

Indeed, tech­nol­o­gy is a very strong com­po­nent in all this, to ensure scal­a­bil­i­ty and fos­ter inno­va­tion. Our expec­ta­tion is that some genius stu­dent at MIT will find a way to ana­lyze all the med­ical records, find pat­terns and pre­dict poten­tial solu­tions that can help spe­cif­ic patients. Per­haps then he or she will cre­ate a start-up, and help build a new eco-sys­tem around those new tools.

In terms of auto­mat­ed assess­ments, we try not to intro­duce too spe­cif­ic lan­guage in the leg­is­la­tion we advo­cate, to make sure each state retains flex­i­bil­i­ty. For exam­ple, New York State may go fur­ther than oth­ers in this area.

The PABI Plan includes a strong tele­health mod­ule, and a Vir­tu­al Cen­ter where fam­i­lies can aggre­gate and share per­son­al health records. This Vir­tu­al Cen­ter will act as a large and open source Fam­i­ly Reg­istry. Fam­i­lies will be able to opt-in, anony­mous­ly, and share a com­pre­hen­sive set of data points. We plan to launch a Beta ver­sion this month, and the full ver­sion with­in a few months.

I would love to hear from any­one in your net­work with ideas in any of these areas.

We will pub­lish this inter­view via our blog and upcom­ing annu­al report, so hope­ful­ly we can build bridges. This whole process to devel­op stan­dard­ized sys­tems of care, com­bin­ing pol­i­cy with data­base-dri­ven inno­va­tion, could become a blue­print to accel­er­ate progress in many oth­er areas of brain health and per­for­mance

Those are your words, but I do believe so. For exam­ple, late last year I met a team of neu­ro­sur­geons at a Trau­ma Con­fer­ence in San­ta Bar­bara, and we dis­cussed how to repli­cate what we are doing with adults over 25. We should be think­ing about the brain through its whole life­time, includ­ing for exam­ple Alzheimer’s Dis­ease. We need to break the silos, to aggre­gate knowl­edge, to help advance our knowl­edge of the brain 50 years in 5 years.

My phi­los­o­phy in all this is that “Things work out best for those who make the best out of the way things work out “. It is unfor­tu­nate that I got involved in this because of Sarah Jane’s prob­lem, but I hope our best efforts will help her and many oth­ers like her.

Patrick, thank you very much for all your efforts to do so. Please do keep us updat­ed, we want to share with our com­mu­ni­ty when the Vir­tu­al Center/ Reg­istry becomes avail­able, and when PABI becomes law.

My plea­sure. I will.


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