Open Sourcing Healthcare One Patient at a Time

Open source healthcare IT solutions are just beginning to become acceptable alternatives toproprietary software systems. As is happening in other fields, opensource medical projects are getting noticed as cost-savingalternatives to proprietary vendors.

The battle for supremacy between the two marketing strategies may gainnational political attention as President Obama’s administrationdrives toward the creation of a national electronichealth records (EHR) network built on standards for interoperabilityand affordability. The US$20 billion in health IT funding incorporatedinto the economic stimulus package is bolstered by the HealthInformation Technology for Clinical Health (HITECH) Act of 2008. Thatlegislation calls for a national, interoperable network of electronichealth records through open source standards.

The stimulus package will pave the way for hospitals to adoptelectronic health records (EHRs). The federal funds will help thehealth records industry solve the lingering financial barriers thathindered health IT adoption in recent years. However, it’s still unclear whether thegovernment will push for open source projects over a specificproprietary software developer.

Meanwhile, a new open source organization called TheBrainProject.orgis seeking both government and private funding for what its founder,New York Lawyer Patrick Donahue, claims is the first-of-its-kind opensource platform dedicated to uniting the medical profession in abattle against Pediatric Traumatic Brain Injury (PTBI).

“It’s a very fractured field out there. It is reminiscent of what thecomputer science industry went through in the 1950s and 1960s whereyou had brilliant people all over the world working but nobody knewwhat everybody else was doing,” Donahue told LinuxInsider.

Industry Skirmishes

Elsewhere in the open source medical records field, a still quietfight is waging between supporters of open source software modeledafter the U.S. Department of Veterans Affairs’ VistA EHR andcommercial vendors. Currently, VistA contains roughly 2.1 billionclinical documents, 2.76 billion orders, and 1.51 billion images.Commercialized versions of VistA, such as MedSphere‘s OpenVista, arevying for selection by hospitals, clinics and integrated deliverynetworks.

Parallel to this controversy, Donahue for the last two years has beenpulling together a crusade to create another type of open sourcemedical records project. This data repository would accumulate medicalrecords on pediatric head injuries and research on the disparatetreatments for victims of Pediatric Traumatic Brain Injury (PTBI).

To that end, Donahue last October launched the Sarah Jane BrainProject. His efforts were aimed at jump-starting innovative treatmentfor brain injuries similar to the one his three-and-a-half-year-old daughter suffers. They spawned anationwide upswell of sponsors to press for federal funding andinternational medical interaction for all victims of PTBI andPediatric Acquired Brain Injuries (PABI).

What began as the Sarah Jane Foundation is now modeled on the samestrategies that drive open source communities., headed by Donahue, is guided by a nationaladvisory board.

“I saw a parallel in how all the breakthroughs in computer sciencecame from sharing knowledge and community-driven activities,” saidDonahue about what led him to travel the open source route for hismedical records public warehouse.

Foundation’s Incubation

Sarah Jane is Patrick’s three-year old daughter. Her nurse shook herwhen the infant was five days old, resulting in Pediatric TraumaticBrain Injury or PTBI. The infant’s injures included three broken ribs,a broken collar bone and severe brain injury. The nurse is currentlyserving a 10-year prison term.

That incident is what introduced Patrick Donahue to the leading causeof death and disability for children under 15 years of age in theUnited States. PTBI causes more than 5,000 deaths annually. It causespermanent disability to more than 17,000 children annually, and some1 million children are hospitalized each year from it, according toDonahue.

PTBI includes all brain injuries caused by trauma from falls, motorvehicle accidents, assaults, sports incidents, gunshot wounds andbicycle accidents.

However, its definition as a children’s death threat is misleading.Some PTBI victims are actually military veterans returning from Iraqand Afghanistan. Since most children’s brains do not fully developuntil age 21 or 22, many of the traumatic brain injuries actuallyqualify as pediatric brain injuries, said Donahue.

Related to this is Pediatric Acquired Brain Injuries (PABI). These arecaused by brain injuries, brain tumors, strokes, meningitis,insufficient oxygen, poisoning, ischemia and substance abuse.

The Mission

Patrick’s goal was to create a model system for children sufferingfrom all Pediatric Acquired Brain Injuries. He envisions the projectbecoming the most collaborative medical project ever put online.

Doctors told him that if he presented just one head injury case to apanel of 20 medical experts, he would get 20 different treatmentapproaches. His response was to put all of his daughter’s medicalrecords online under General Public License (GPL) and invite doctors and researchers toaccess them.

“This is scary stuff,” he said upon learning about the fragmentedknowledge left untracked in the medical field. His own research quicklyshowed him that there was no organized set of data on the injuries ortreatments for PTBI. He recognized that medical science is just barelyscratching the surface on brain injuries.

The commonality with all head trauma victims’ families is constantlyhaving to reinvent the wheel. There is no standardization of care,according to Donahue.

“It’s a crap shoot from state to state,” he noted.

Fractured Funding

Donahue also learned from medical practitioners that the problem hefaced in setting up a pediatric brain injury model system is politicalsupport and funding for the pediatric treatment.

No stranger to the worlds of politics and fund-raising in his homestate, Donahue knew that politicians listen to victims and victims’families. He sought the creation of a PBI Act in Congress. Hedelivered a letter to President Obama at the onset of hisadministration pleading the case for federal support for his infantfoundation.

To maximize his chances for widespread acceptance, doctors andsupporters he worked with suggested that Donahue expand the scope ofhis medical records repository to include Pediatric Acquired BrainInjuries. That larger victim group is now the focus of his efforts.

“The medicine and the science goes where the money is,” Donahue said.

If We Build It …

The concept behind creating an open source medical repository of dataon PTBI and PABI victims will bring truth to the old saying, “If we buildit, they will come,” according to Donahue.

The exposure of medical records includes the complete medical andtherapy records on Sarah Jane. In addition, the records of otherchildren suffering from PABI are available to doctors, researchers,other parents and caregivers, therapists, students and the generalpublic through the project’s Web site.

The project uses the GNU open source principle to empower the medicalcommunity. Donahue hopes that licensing the medical records andgoing about the discovery process in the same way that software communities workwill jump-start more effective treatments.

The End Game

Donahue admits he is not a patient man when it comes to the welfare ofhis daughter. He expects the open source medical records project willaccelerate the progress of medical research for head injuries.Traditional boundaries will not slow down that progress.”Some medical researchers might pore over one or more reports in themiddle of the night instead of looking at football results,” heexplained.They’d better — it’s the only way the project will succeed in cramming 50 years of progress into the next five.

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