Patients need to play a greater role in the development of health IT standards to avoid a lack of public participation that could undermine the federal government's $19 billion initiative to spur the use of digital records in healthcare, according to an alliance of consumer, labor and patient advocacy organizations.

The Consumer Partnership for eHealth, whose member organizations include 127 million people, issued a multipoint analysis (PDF) Friday of ways to expand healthcare consumers' role in the development and implementation of national health IT standards and initiatives. Without that greater involvement, the groups warned, ongoing health IT initiatives could falter.

"New delivery and payment system models, such as accountable care organizations and patient-centered medical homes, will not only require greater consumer engagement in their health, but will also require consumer trust and acceptance as these new approaches aim to improve care and decrease costs," they wrote. "Absent information to the contrary, any effort to reduce costs is likely to be perceived as an effort to skimp on care."

The concerns raised by the group echo the findings of some previous national polls, including a Harris Interactive survey of U.S. adults conducted in February for the Commonwealth Fund. Although greater use of health IT, in general, was broadly supported, respondents were more cautious about its use in their healthcare. For instance, 92% agreed that it is important for doctors to share information electronically with other doctors, but only half of respondents wanted to access their medical records through the Internet.

Christine Bechtel, vice president of the National Partnership for Women and Families, a member of the consumer alliance, said the group is generally satisfied with the degree of consumer participation in the development of the federal health IT program. But greater consumer representation is needed, she said, among the state- and local-level entities implementing many of the health IT programs funded by the federal program.