Administration urged to engage public on e-health records

As the Obama administration seeks to determine who uses electronic health records and for what purposes, some health information technology specialists say it is critical that the public provide feedback on the issue. They note it could dictate how billions of economic stimulus dollars are spent.

The 2009 American Recovery and Reinvestment Act allocated about $20 billion to encourage doctors and hospitals to install e-records systems by 2014. Medical professionals who make "meaningful use" of e-records by 2011 or 2012 would be eligible for up to $44,000 in Medicare payments spread out over five years. An advisory committee within the Health and Human Services Department met on June 16 to begin defining meaningful use.

While HHS opened the meeting to the public and is seeking comment on proposed recommendations, "they could go further to talk about a variety of different public and consumer uses and sort of their vision for where they want this [process] to go," said Michael W. Painter, senior program officer at the Robert Wood Johnson Foundation, a philanthropic organization that focuses on health issues. For example, a Google consumer health application could meet the meaningful standard and should be discussed in public forums, he said.

"I thought the meeting was excellent and thought-provoking . . .[but] the vision they come up with and the definitions they create should incorporate a specific role for the public," Painter said.

One predicament might be that federal officials and the public are talking past each other. Americans are weighing in on health care reform via opinion polls, and White House officials have said they want feedback on administration proposals, but the two sides do not have a forum for direct communication, say some health care system critics.

"In my view, there are parallel universes of health care reform discussion. One is what everyday people are saying and thinking. . . .And, yes, the White House hopes people will visit its site on reform and weigh in," said Brian Klepper, managing principal of Florida-based market research firm Healthcare Performance Inc. "The core problem here is that there is no political power center for regular people to glom on to health care reform."

Furthermore, some potential meaningful uses will be more important to patients than providers, insurers, vendors and everyone else getting health IT stimulus funding. Some observers argue that the definition of meaningful use should explicitly grant patients the right to access data entered by physicians or even own it so they can take it and pursue treatment elsewhere.

In testimony on May 20 before an HHS advisory panel, Marc Donner, director of engineering for Google Health, said, "Requiring recipients of federal funds who purchase EHRs to make patient medical records available online in [compatible formats], using nonproprietary vocabularies where possible, would further encourage [information sharing] and portability, both of which are key components to increased consumer adoption and empowerment."

Scott Wallace, chairman of a federal commission that advised the Bush administration on health IT information sharing, said patient advocacy groups, rather than individual members of the public, could have the biggest impact on shaping policy.

"Those representing patient groups have to focus on pushing for a meaningful use system that focuses on patient-centered care," said Wallace, now a Batten Fellow at University of Virginia's Darden School of Business.

Administration officials said, in the future, they plan to utilize more communication channels to encourage public engagement and collaboration.

"We are reaching out and providing every American the opportunity to comment on the web and through other channels. The process has been marked by unprecedented openness and transparency and that will continue," HHS spokesman Nick Papas said. "As we move forward, we will be expanding our outreach efforts and using as many tools as possible to solicit input from the American people."