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 »

The AAA Foun­da­tion for Traf­fic Safety just started to rec­om­mend a new dri­ver safety pro­gram called Dri­ve­Sharp (see AAA and Posit Release Pro­gram to Improve Dri­vers’ Minds), devel­oped by Posit Sci­ence. Dri­ve­Sharp is a com­put­er­ized cog­ni­tive assess­ment and train­ing tool based on Kar­lene Ball’s research on older adults’ cog­ni­tive fit­ness and driving.

In the press release for the agree­ment, Peter Kissinger, dri­ver safety research and pol­icy vet­eran and CEO of the AAA Foun­da­tion, says that “Part of mak­ing our nation’s roads safer is help­ing mature dri­vers who wish to stay active — a quickly grow­ing pop­u­la­tion — main­tain or improve their dri­ving safety.”

We have Peter Kissinger with us to dis­cuss the con­text for this inno­v­a­tive initiative.

Peter, I appre­ci­ate your time. In order to set the con­text, would you intro­duce the role and pri­or­i­ties of the AAA Foundation?

Sure. All your read­ers will know that AAA is the main dri­ver asso­ci­a­tion in North Amer­ica, with over 50 mil­lion mem­bers. The AAA Foun­da­tion is focused on the research and pol­icy required to improve dri­ver safety and has 4 strate­gic pri­or­i­ties:
– Intro­duce a cul­ture of traf­fic safety. It is an out­rage that there is a driving-related death every 13 min­utes in the US, and yet, we seem to accept this as sta­tus quo
– Improve road safety, espe­cially on rural roads, where almost 60% of the deaths occur,
– Improve safety among teens, one of the high­est risk groups
– Improve safety among seniors, another high-risk group.

In terms of driver-centered inter­ven­tions, are your pri­or­i­ties are teenage and older drivers?

Yes. You have prob­a­bly seen the U-shaped risk curve (Edi­tor note: see fig­ure at left) that shows how acci­dent risks are very high among teenagers, then decrease and remain sta­ble until our 60s, and then increase again.

We have pro­moted ini­tia­tives such as Dri­verZED (see www.driverzed.org) to help teenagers bet­ter iden­tify and man­age the typ­i­cal sources of risk, so they advance faster through the learn­ing curve. For older dri­vers we focus on how to bal­ance the priv­i­lege of dri­ving with the right of mobil­ity — we know that los­ing dri­ving inde­pen­dence can bring a vari­ety of neg­a­tive con­se­quences for the individual.

Given aging pop­u­la­tion trends, it is clear we need to intro­duce bet­ter sys­tems to bal­ance those two goals you just out­lined –safety and mobil­ity. Do you think as a soci­ety we are prepared?

I don’t think we are, and I am pes­simistic that we will be in the short term. This is a very impor­tant prob­lem: offi­cial esti­mates say that the pro­por­tion of all dri­vers who are over 65 years of age will grow from 15% today to 25% in 2025.

Let me give you some back­ground: two years ago we put together a work­shop to iden­tify the state of the research and the state of the prac­tice of dri­ver safety among Read the rest of this entry »