Study says public needs to know more about health IT benefits

Story updated on Feb. 23, 2009

The federal government must educate citizens about the benefits of electronic medical records to justify the trade-off between patient privacy and health care improvements, according to a report released on Wednesday by the National Academy of Public Administration.

The report, "A National Dialogue on Health Information Technology and Privacy," is the result of an online discussion the academy led last fall on how to use IT to improve care and protect patient information.

The weeklong discussion attracted more than 2,800 visitors and hundreds of ideas and comments from health care IT officials and stakeholders, including Vivek Kundra, who is being considered for the position of e-government administrator at the Office of Management and Budget. OMB, the General Services Administration and the Federal Chief Information Officers Council asked the National Academy of Public Administration to moderate the debate.

The report said consumers are likely to endorse uses of health information technology if it would improve their personal care, but are reluctant to support using their data for research or broad health care initiatives.

"People seemed to understand in a very personal way the risks to privacy associated with things like electronic health records," said Lena Trudeau, program area director at NAPA. "They don't seem to connect in the same way how the use of health care IT can result in better personal outcomes."

Participants understood in abstract terms how electronic health records could improve health care as a whole, but did not grasp the personal benefits in the same way they did the privacy risks, according to Trudeau.

"It's not clear where they draw the line. There's a big gap. As we look to find solutions and better leverage IT, we have to understand that gap and educate people on what's in it for them," she said.

According to Trudeau, expanded use of IT would give patients better access to their health records and allow them to see who is viewing their information.

"If I knew what was in my records, could port them from one doctor to another and understand the gaps or errors, that's a real benefit to me," she said. "That's not possible without leveraging information technology."

Trudeau and NAPA fellow Alan Balutis, who also is director and distinguished fellow for Cisco Systems Inc.'s Internet Business Solutions Group, agreed that the government must do more to engage the public and promote electronic health records.

Balutis said the discussion about privacy is dominated by the extremes, with "privacy fundamentalists" and technology enthusiasts driving much of the debate. Most Americans are somewhere in the middle, he said, noting they are willing to share information if they perceive a benefit other than just reducing health care providers' costs. He also said the economic stimulus package, which includes $20 billion for health IT, will drive some progress, particularly on privacy guidelines.

"Clearly, this is an important issue at this point in time, given the investment," Balutis said. He hopes President Obama will quickly name health care policy leaders at the Health and Human Services Department and the White House.

Some participants in the online discussion expressed doubt about the promise of technology, saying there is little scientific evidence to support the claim that IT can improve patient outcomes.

"Whether or not it's true, it's important to note that perception exists," Trudeau said. "The government needs to be doing more of this kind of engagement to test these things. The last thing it wants to do is put out a new proposal for reinventing health care and have people react negatively."

She said the debate over what personal data individuals will or won't share is ongoing, but she believes a consensus can be reached. Information participants in the conversation deemed sensitive included mental health treatment or long-term illness, both of which could affect a patient's career. "The answers exist, but we don't have them right now," Trudeau said.

In his online comments, Kundra advocated using health care data to improve patient care, citing his success with releasing government data as District of Columbia chief technology officer.

"We should leverage the power of democratizing data to start a technology revolution in health care. Without violating privacy, today we have the ability to publish enormous amounts of data that would reveal the inner workings of our health care system, so we could finally begin to transform it," Kundra wrote.

Noting Obama's promise on his first day in office to promote openness and transparency, Trudeau said, "What better issue is there to be open and transparent on a broad scale than the issue of health care?"

Correction: Lena Trudeau, program area director at NAPA, was incorrectly quoted by Nextgov. The correct quote is, "It's not clear where they draw the line. There's a big gap. As we look to find solutions and better leverage IT, we have to understand that gap and educate people on what's in it for them." The story has been updated to correct this error.