Work early to gain consent of patients

Gaining patient consent and provider adoption for health information exchanges (HIEs) is important for the success of the effort, and patients must be adequately educated about the HIE or they may not give their permission, says Jared Rhoads, senior research analyst with CSC, a technology consulting company based in Falls Church, VA.

The information provided to patients should explain the purpose, benefits, and risks of data sharing, so patients make informed decisions, he says. This includes understanding what information is being shared across the exchange, which organizations are participating, what safeguards have been put in place to protect their privacy, who can access and use the information, and where the data reside.

Rhoads notes that education to gain community support can take a number of forms. Printed materials, direct mailings, and even paid advertising can be effective. Some HIEs post informational videos online or sponsor kickoff events that are open to the public. As part of its consumer education campaign, the Vermont Information Technology Leaders (VITL) health exchange showcased the fact that VITL's standards for privacy and security exceed those used by the federal government, Rhoads says.

Physicians can have great impact on the education process and can encourage patients to trust the security of the HIE, he says.

"Patients usually trust their physician, and that dialogue between the doctor and the patient can be one of the most effective ways to tell patients what the HIE is all about, how it works, and why it's a good idea to participate," Rhoads says. "Getting the physicians on board and enthusiastic can be very beneficial if they are then willing to talk with their patients and tell them why the HIE will benefit and why they should consent."

Advance notice of the HIE also is important. No one likes to be surprised by a big project that involves their sensitive data. Rhoads points out that when patients in the United Kingdom were notified of an HIE project in development and given plenty of time to learn about it, almost everyone consented. But when patients in the Netherlands were informed about an HIE at the last minute, just before the system was ready to go, they did not respond well to the letters asking for permission. They balked, with many refusing and others sending incomplete information in response, which led to a significant delay in starting the HIE, Rhoads says.

Rhoads notes that the patient does not have to consent to any and all transmission of personal health data. Some flexibility is acceptable and can encourage higher rates of consent. For instance, the HIE may offer patients the ability to allow access to data only for emergencies, or to allow or disallow data from certain sources.

"It doesn't have to be all or nothing," he says. "It's better to have a lot of people consent to using the data in some ways than to have them all decline because there were some types of data or some specific uses that they objected to."