Sharp Brains: Brain Fitness and Cognitive Health News

Neuroplasticity, Brain Fitness and Cognitive Health News

Icon

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.

Links:


Leave a Reply...

Loading Facebook Comments ...

Leave a Reply

Categories: Cognitive Neuroscience, Health & Wellness

Tags: , , , , , , , , , , , , , , , , ,

About SharpBrains

As seen in The New York Times, The Wall Street Journal, BBC News, CNN, Reuters,  SharpBrains is an independent market research firm tracking how brain science can improve our health and our lives.

Search in our archives

Follow us and Engage via…

twitter_logo_header
RSS Feed

Watch All Recordings Now (40+ Speakers, 12+ Hours)