In health care policy debate, some bypass White House's official site

The debate on health care reform is heating up through informal online channels such as blogs, social networking sites and e-mail campaigns, rendering official White House Web sites created to foster the policy discussions nearly inconsequential, some nongovernmental health specialists say.

A concept of a public health insurance plan under debate in Washington is stirring up online disputes, as is the push to adopt health care information technology. Health IT provisions in the economic stimulus package -- a marker for the wider health care revamp -- give doctors and hospitals incentives to buy into using certified electronic records systems by 2014. The Recovery Act appropriates about $20 billion to encourage the use of e-health records.

These discussions would seem to advance President Obama's ambition to overhaul the health care system in a manner that benefits all Americans. "The President has vowed that the health reform process will be different in his administration -- an open, inclusive, and transparent process where all ideas are encouraged and all parties work together to find a solution to the health care crisis," the White House Web site states. "Please visit www.HealthReform.gov to learn more about the president's commitment to enacting comprehensive health reform this year."

HealthReform.gov directs proponents of the president's agenda to digitally sign a letter that, in order to pledge support, they must enter a name, ZIP code and e-mail address.

But influential physicians, health IT vendors, insurers and patients have bypassed the White House to take the debate over health care reform to other Web sites. Popular interactive sites include e-Patients.net, which advocates patients empower themselves by becoming more informed about their illnesses; The Health Care Blog, where well-known health care experts post opinion pieces; and Fix Health Care Policy, a site supported by the conservative policy think tank the Heritage Foundation.

"I personally am barely aware that [the federal sites] exist," said Dave deBronkart, better known as e-Patient Dave to followers of his commentary on social forums, including e-Patients.net. "I've been on WhiteHouse.gov maybe once."

When diagnosed with advanced kidney cancer, deBronkart learned to depend on health IT to beat the illness. After accessing his personal health data to understand the severity of his illness, deBronkart shared the prognosis with an online patient community that told him to seek a treatment called Interleukin-2. He credits the drug with saving his life.

DeBronkart, a software marketer, is now a blogger and contributor to the e-Patient Scholars Working Group, an online discussion site for individuals interested in using technology to inform their health care decisions. "Because of the people who are following me through social media, I know that people who are involved in White House policy discussions have seen what I've written and been influenced by it," he said.

As a result of speaking to nonprofits and blogging, deBronkart was invited to lecture at a June 2 board of directors meeting of the National eHealth Collaborative, a public-private partnership that operates in conjunction with the Health and Human Services Department. HHS recently tapped nine board members to serve on committees that will advise the administration on health IT policy and standards.

"I'm blogging my breath off, and I'm using Twitter. I have a pretty wide network of health care policy connections," he said. "There are two parts to social media . . . one is putting stuff out there, but the other is listening. The people who really make a difference in this new network of communications approach are the people who are doing both."

But there is disinterest among individuals like deBronkart in following all the administration's health reform discussions. He was unable to watch a live webcast that aired on June 16 kicking off a discussion on defining health IT, a process that eventually will dictate which doctors and vendors are awarded stimulus funding for using e-health records. "I wasn't able to listen to the whole thing, because I was at work," deBronkart said. "I imagine there was a replay of it, but I honestly don't have the time to chase down all of the posts that have been written on that day."

Health IT specialists said arguments over health IT policy -- such as the definition of "" of health IT -- are ubiquitous in the blogosphere, but it is hard to know if the messages are getting to Obama.

There are aspects of the health care debate that are occurring completely online "that may be channeling to the White House and the Obama health team," said David C. Kibbe, senior adviser to the American Academy of Family Physicians. "But the communications to and with the Obama team are sketchy, informal and largely uncertain as to their impact or influence. The platform for the debate is certainly not one that is set up by the administration."