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Open Sourcing Healthcare One Patient at a Time

By Jack M. Germain
Apr 1, 2009 4:00 AM PT

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

Open Sourcing Healthcare One Patient at a Time

The battle for supremacy between the two marketing strategies may gain national political attention as President Obama's administration drives toward the creation of a national electronic health records (EHR) network built on standards for interoperability and affordability. The US$20 billion in health IT funding incorporated into the economic stimulus package is bolstered by the Health Information Technology for Clinical Health (HITECH) Act of 2008. That legislation calls for a national, interoperable network of electronic health records through open source standards.

The stimulus package will pave the way for hospitals to adopt electronic health records (EHRs). The federal funds will help the health records industry solve the lingering financial barriers that hindered health IT adoption in recent years. However, it's still unclear whether the government will push for open source projects over a specific proprietary software developer.

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

"It's a very fractured field out there. It is reminiscent of what the computer science industry went through in the 1950s and 1960s where you had brilliant people all over the world working but nobody knew what everybody else was doing," Donahue told LinuxInsider.

Industry Skirmishes

Elsewhere in the open source medical records field, a still quiet fight is waging between supporters of open source software modeled after the U.S. Department of Veterans Affairs' VistA EHR and commercial vendors. Currently, VistA contains roughly 2.1 billion clinical documents, 2.76 billion orders, and 1.51 billion images. Commercialized versions of VistA, such as MedSphere's OpenVista, are vying for selection by hospitals, clinics and integrated delivery networks.

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

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

What began as the Sarah Jane Foundation is now modeled on the same strategies that drive open source communities. The, headed by Donahue, is guided by a national advisory board.

"I saw a parallel in how all the breakthroughs in computer science came from sharing knowledge and community-driven activities," said Donahue about what led him to travel the open source route for his medical records public warehouse.

Foundation's Incubation

Sarah Jane is Patrick's three-year old daughter. Her nurse shook her when the infant was five days old, resulting in Pediatric Traumatic Brain Injury or PTBI. The infant's injures included three broken ribs, a broken collar bone and severe brain injury. The nurse is currently serving a 10-year prison term.

That incident is what introduced Patrick Donahue to the leading cause of death and disability for children under 15 years of age in the United States. PTBI causes more than 5,000 deaths annually. It causes permanent disability to more than 17,000 children annually, and some 1 million children are hospitalized each year from it, according to Donahue.

PTBI includes all brain injuries caused by trauma from falls, motor vehicle accidents, assaults, sports incidents, gunshot wounds and bicycle accidents.

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

Related to this is Pediatric Acquired Brain Injuries (PABI). These are caused 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 suffering from all Pediatric Acquired Brain Injuries. He envisions the project becoming the most collaborative medical project ever put online.

Doctors told him that if he presented just one head injury case to a panel of 20 medical experts, he would get 20 different treatment approaches. His response was to put all of his daughter's medical records online under General Public License (GPL) and invite doctors and researchers to access them.

"This is scary stuff," he said upon learning about the fragmented knowledge left untracked in the medical field. His own research quickly showed him that there was no organized set of data on the injuries or treatments for PTBI. He recognized that medical science is just barely scratching the surface on brain injuries.

The commonality with all head trauma victims' families is constantly having 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 he faced in setting up a pediatric brain injury model system is political support and funding for the pediatric treatment.

No stranger to the worlds of politics and fund-raising in his home state, Donahue knew that politicians listen to victims and victims' families. He sought the creation of a PBI Act in Congress. He delivered a letter to President Obama at the onset of his administration pleading the case for federal support for his infant foundation.

To maximize his chances for widespread acceptance, doctors and supporters he worked with suggested that Donahue expand the scope of his medical records repository to include Pediatric Acquired Brain Injuries. 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 data on PTBI and PABI victims will bring truth to the old saying, "If we build it, they will come," according to Donahue.

The exposure of medical records includes the complete medical and therapy records on Sarah Jane. In addition, the records of other children suffering from PABI are available to doctors, researchers, other parents and caregivers, therapists, students and the general public through the project's Web site.

The project uses the GNU open source principle to empower the medical community. Donahue hopes that licensing the medical records and going about the discovery process in the same way that software communities work will jump-start more effective treatments.

The End Game

Donahue admits he is not a patient man when it comes to the welfare of his daughter. He expects the open source medical records project will accelerate 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 the middle of the night instead of looking at football results," he explained. 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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