A new set of Nationwide Health Information Network capabilities will be demonstrated at next month's NHIN Forum, but what happens after that is anybody's guess.

The Office of the National Coordinator for Health Information Technology (ONC) had announced a goal of getting the 19 organizations participating in trial implementations ready to exchange live data in 2008. That goal seems to have been achieved for the most part " at least from a technical perspective.

Participants will demonstrate their ability to exchange data at the forum in Washington, but they won't be using real data because they aren't ready to go live.

Several elements of a network for exchanging patients' medical records remain elusive, including integrating new participants into the network and governing its operations.
"We're looking for what we will do to go into limited production in 2009," said Ginger Price, ONC's NHIN coordinator.

There's a growing consensus that a process is needed to ensure that new NHIN participants are ready to exchange data and enforce network policies. "I think there must be some kind of certification component," Price said, adding that such a program is only at the planning stage.

One of the more difficult aspects of governance has been the development of a data use and reciprocal support agreement (DURSA) that a variety of participants could sign. Although various state and local laws apply to such activities, sources say that has not been an insurmountable barrier. Instead, simply reaching agreement among the 19 participants has proven difficult. Live operations cannot begin without a DURSA to establish the rules.

Because such an agreement will not cover all eventualities as NHIN matures, the network will also need a governing body. AHIC Successor, the public/private partnership the Health and Human Services Department is creating outside the government to guide health IT development, might take on that role. However, how or when that will happen is not clear.

"I feel very strongly that the NHIN is not going to succeed unless there is a broad oversight mechanism," said John Houston, vice president of privacy and information security at the University of Pittsburgh School of Medicine, at a meeting of the National Committee on Vital and Health Statistics (NCVHS) Executive Committee in October.

For example, he asked, what happens when an individual with NHIN access misuses some of the data? Who acts on complaints about network activities? The network will need someone to respond to consumer concerns, but "none of this exists today," he added. He said governance should be built into the network. "It needs to be addressed now."

Harry Reynolds, NCVHS' chairman, agreed that governance questions must be answered. "This is one of the paramount subjects that's out there," he said.

ONC has promised to deliver a privacy and security framework for health IT this year, but in October, staff members sounded less than confident that they could meet that goal. Price listed the framework among the unresolved NHIN issues but said ONC would be issuing some guidance.

"We're still hopeful that will happen under [HHS] Secretary [Mike] Leavitt," said Jodi Daniel, director of ONC's Office of Policy and Research.

Even greater uncertainty surrounds funding for next year. "Most of the agencies within the executive branch of the government probably don't know at this point what kind of budget or what kind of direction they'll have for 2009," said Jeff Blair, director of health informatics at the Lovelace Clinic Foundation and a leader of the developing New Mexico Health Information Collaborative, which is participating in NHIN.

Like most other federal agencies, ONC has been operating under a continuing resolution that giv es it temporary funding until a federal budget is enacted. With a new president and Congress arriving in January, there might not be a budget before the continuing resolution expires in March. By then, the government will be halfway through its fiscal year.

This year's NHIN development work was performed under contracts with the participating organizations, which totaled more than $23 million. It's doubtful that the organizations can make much more progress without additional funding because many of the participants are start-up organizations that have limited resources.

The next administration also might have different ideas about how to develop the health IT infrastructure. In an online Health Affairs article published in August, Dr. Carol Diamond, managing director of the Markle Foundation's Health Program, and Clay Shirky, an adjunct professor in the graduate Interactive Telecommunications Program at New York University, criticized the Bush administration for focusing its health IT efforts on standards and technology while ignoring policy questions such as those associated with privacy and security. Although the authors did not mention the Bush administration by name, they described HHS' strategy as doomed to miss the mark.

Developing a new strategy would take time, even if the effort's leaders are in place early next year. "I think they're going to be so new that it's going to take time for them to have an impact," said Lorraine Fernandes, a vice president at Initiate Systems. Her company provides software and services to more than half of the organizations participating in the NHIN program.

The best approach to organizing the effort also could be up for discussion. A new HHS secretary would have the authority to abolish or reorganize ONC. Deciding what to do with the office could take months because so many decisions await the new administration.

Despite the uncertainty, Blair and other observers say there has been great progress this year. "We have more than a technical relationship now among all of the participants," he said. "We have a community of 19 networks."

"The value of the NHIN to us is very significant," Blair said, adding that one of the most exciting aspects is exchanging data with federal health care facilities in his state. Often, patients treated at clinics and hospitals run by the Defense and Veterans Affairs departments and the Indian Health Service, which are NHIN participants, also receive care from private providers in New Mexico, he said.

"The ability to have critical information flow between these federal agency health care systems and the private-sector health care systems " our health plans see the value of that very clearly," Blair said. "It has great value for improving quality of care and reducing the cost of care."