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Speaking at Mayo, Bob Dylan’s son describes efforts to promote global health-care information

ROCHESTER, Minn. — The open source movement already has produced innovations like online encyclopedia Wikipedia and the Linux operating system.

By creating a free or “open” platform that allows people to share and analyze information, the system can tap the collective intelligence of the world to improve technology and solve global problems.

In other words, 6 billion brains are better than one.

Some health-care advocates want to apply the open concept to medicine. Dubbed “collaborative clinical care networks,” these databases offer doctors, patients and researchers ways to enter, search and access a vast pool of clinical and anecdotal data unavailable to any one person or institution.

“It’s the kind of thing [the Defense Advanced Research Projects agency] should build,” filmmaker Jesse Dylan told attendees at the Mayo Clinic’s Transform 2010 conference in Rochester Monday. “There is no one system online that does that. There’s a lot of incredible science that can come out of that.”

The concept combines two powerful forces sweeping health care: the use of computers to spot trends from lots of information (data mining) and patients asserting a greater role in their care.

Dylan, son of singer Bob Dylan, founded Lybba, a non-profit organization devoted to open source health care, after doctors diagnosed his son with Crohn’s disease, a severe inflammation of the intestine that causes stomach aches and diarrhea. He grew frustrated at his inability to find quality information on treatments that might help his son.

“The problem is not information,” Dylan said. “The problem is context. We deserve to have these clinical guidelines available to everyone.”

Meanwhile, better-educated patients can work with doctors on improving their care, he said.

Lybba is partnering with Cincinnati Children’s Hospital and ImproveCareNow, which includes the Mayo Clinic and the University of Minnesota, to create a collaborative clinical network that focuses on Crohn’s disease. The National Institutes of Health is funding the project with a $8.3 million grant.

For researchers, these online social networks offer a treasure trove of real-time patient data, including symptoms, diets and reactions to medications.

Researchers often can’t afford clinical trials or find enough suitable patients or biological samples for the trials, said Ian Eslick, a graduate student at the Massachusetts Institute of Technology who developing LAMsight, a collaborative network for lymphangioleimomatosis patients, doctors and researchers.

“Patient experiences are an incredibly valuable source of information,” Eslick said.

The networks also can improve the patient-researcher relationship, he said. Patients often “feel like lab rats,” so researchers can ease that feeling by using the networks to help patients better understand the byzantine world of clinical trials, Eslick said.

Comments (2)

  1. Submitted by Bernice Vetsch on 09/14/2010 - 04:58 pm.

    The only problem is the threat to patients’ privacy. If hackers can break into secret government sites, can they not more easily get into the place in Maine (MAINE instead of Minnesota!) to and from which Tim Pawlenty wants our medical information to travel?

  2. Submitted by Susan Lesch on 09/14/2010 - 08:01 pm.

    I think the Obama administration made a decision early on to ask the NSA (rather than the department of homeland security) to look over our files. I have since decided they are probably needed.

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