In a webinar hosted by the Washington, D.C.-based National eHealth Collaborative (NeHC) last week, several HIE directors and federal and state officials discussed how to create effective trust and governance models to build sustainable health information exchanges (HIEs). Overwhelmingly, industry experts say that inclusive involvement from the community’s stakeholders—which may include clinicians, consumer groups, payers, and state representatives—on the HIE board instills the confidence to drive effective information exchange.

Mark Jones, COO and principal investigator of SMRTNET, a publicly-owned network of affiliated HIEs spanning the state of Oklahoma, says that rather than building one single network, SMRTNET built upon already trusted and established networks like the Oklahoma State Medical Association, Native American tribes, the Greater Oklahoma City Hospital Council, as well as others. Not only did this breed trust, but each of the eight exchanges defines its own goals and parameters around governance and sends two members to sit on a central SMRTNET management committee. “We define governance as being organizational and consensus based in nature, with common legal documents: a security policy, a sustainability plan, and a clinical clarification on what the purpose of the network is,” says Jones.

Jones adds that each network can have different data sharing agreements and different technologies, but each network does share a common technology to link up to the other SMRTNET networks. Giving each network a voice in the management committee breeds trust and a common goal. “What we found here was that whether it was optometrists, physicians, or many of the Native American tribes in the state,” Jones says, “once they have a governance board like them, they are much more encouraged to join. They have common interests that they can share with each other, and some data elements even.”

Tom Deas, M.D., CMO, Sandlot, believes that trust within an HIE is largely built through transparent communication and compliance with all regulatory processes, both in the Health Insurance Portability and Accountability Act (HIPAA) and otherwise, to protect patient information and make sure that the stakeholders, board members, and users understand all the effort that is invested in making that information protected and secure. Sandlot, which is wholly-owned subsidiary of the North Texas Specialty Physicians (NTSP), has a governance board that includes practicing physicians, healthcare business leaders, and consumer and community leadership. “Trust is essential in sustaining an HIE,” says Deas. “Without the trust of our patient and community population and the physicians, and the security and integrity of the data in the HIE, you have literally nothing.”

HIE governance is a way to set the ‘rules of road,’ so providers are assured that data transfer is secure and in a standard format, says Mary Jo Deering, Ph.D, senior policy advisor, Office of the National Coordinator (ONC). These standards set by the HIE governance also allow entities to know they are exchanging with other reputable entities. “Quite reasonably, localities and states look to HIPAA as a certain baseline for those covered entities,” says Deering. “On the other hand, states themselves play a significant role in establishing their own privacy policy. There has always been a balance and a blending between a federal regulatory activity around trust and the states’ powers and authorities.”

Deering says that that health IT leaders should follow the work of the ONC HIT Policy Committee, which developed recommendations at the end of 2010 advocating the need for HIEs to establish core conditions around privacy, interoperability, and validation processes for entities. She says that the ONC is evaluating privacy recommendations from the Privacy and Security Tiger team, as well as standards recommended in September for the Nationwide Health Information Network (NwHIN) handed down by the HIT Standards Committee. Deering also urges HIEs to examine the NwHIN data use and reciprocal support agreement (DURSA), which has been signed by three states and 10 regional HIEs—five states and eight HIEs will be signing soon.

Chris Muir, state HIE project manager, ONC, who manages 27 states and territories in the State HIE Cooperative Agreement Program, says that ONC can’t make a federal data sharing agreement template, but it can provide helpful tools for states. The ONC has been listening to where states are struggling and are providing the states with tools and technical assistance from Deloitte (New York City). “We do some match-making between the states,” he says. “So, if we see one state struggling with something, and we know another state has figured that issue out, we bring those states together and encourage them to talk.”

Communicating the Value of the Exchange
Mike Smyly, chief business development officer, Inland Northwest Health Services (INHS), says that new participants need to understand the financial viability of the exchange and its business model, so they understand the long-term investment for their organization and can feel comfortable from onset that value will be delivered. INHS, based in Spokane, Wash., started its HIE as a HIT collaborative in 1994 with an advisory structure made up of hospitals, community physicians, community business leaders, and members of the state HIE.

Smyly recommends that HIEs have new member discussions about federal , state, and exchange guidelines (HIEs should also provide those in written format); data sharing agreements; and all the complexities involved. “There’s a great deal of comfort for your new HIE members in opening up [the discussion] for existing members to have the opportunity to discuss their experience and help share the trust they have had [in the exchange],” says Smyly.

“I think the other part of building trust is communicating the success of the information exchange and how it has impacted care delivery, how it’s improved the quality of care, and perhaps limited some of the cost,” says Sandlot’s Deas. “To share those stories in an open fashion allows the value of the system to be appreciated.”

SMRTNET’s Jones remembers a presentation he gave five years ago in front of a large group about the benefits of HIE, and how the tenor of the discussion changed once a physician stood up to encourage his colleagues to get involved because, as he said, ‘patient care was on the line’. “The message and the messenger are so important here, and we have to rely on the participant and particularly the clinicians, to be the messenger,” says Jones. “It’s up to us to find the right words to communicate that.”

Jones says that his system tracks its patient opt-outs—which are normally in the 2 to 3 percent range—closely for patterns. In the past, opt-outs usually clustered around a staff person who felt uncomfortable with the HIE process; but once that person was engaged with training, they usually felt better, he says.

Smyly says that the INHS physicians have become champions for the exchange, and educate their patients about the HIE with collateral materials. INHS also runs local TV ads to promote the value of its information exchange. ONC’s Muir believes that the most successful ways to share the value of information exchange to patients are through stories about real patients. He says many HIEs have developed YouTube videos that communicate these stories.