"There are all sorts of studies that show how people are using information technology to enrich every aspect of their lives," says Kate Berry, CEO of the National eHealth Collaborative (NeHC), a private/public partnership aimed at encouraging widespread exchange of online health information. "Let's face it—no one has a travel agent any more. We do all of our travel planning online, all of our banking online, and all of our shopping online—we've hardly begun to take advantage of that information-sharing capability in healthcare."
Thus the birth of the NeHC Consumer Consortium, a group that had its first meeting this past May, with the daunting goal of discovering ways to put health information technology in the hands of patients, to lead to more open communication between patients and physicians and better health and wellness (which translates to lower costs) for the public overall.
For the purposes of the Consumer Consortium, "Health IT" and "eHealth" are defined broadly as any information that the general public can access regarding health, wellness, disease conditions, treatment options, etc., via websites, mobile applications, online databases and resources, and other tech tools. "It's any increased dialogue—informed by such tools or resources—between the patient and the provider or care team they might be seeing," explains Berry.The consortium brings together stakeholders across the industry, and is led by a "steering committee" of 13 members, including experts from the Office of the National Coordinator for Health IT (ONC), the Consumers Union, the National Patient Advocate Foundation, the American Association of People with Disabilities, and others.
"NeHC is serving as a neutral convener of all the interested stakeholders on this topic, so we've got pretty much everyone at the table," says Berry. Attendees included patient advocacy organizations, pharmaceutical companies, and even individuals not associated with any particular organization, but who are passionate about the widespread use of health IT.
The first goal is to pool resources and share expertise and best practices, says Berry. "Given that these many different identities may already be doing something around [health information] education and engagement ... we're hoping to serve as a forum for sharing ... to come up with a comprehensive inventory of what everyone is doing and identify where the gaps are."
Secondly, the consortium offers a chance for all stakeholders to ask and answer questions: What are the most important messages patients need to know? Why should I care about health IT? What can this mean to me? The idea is to reach an agreement among stakeholders on what the key messages concerning health IT are, who the most trusted messengers are, and the best strategies for disseminating that information.
At the first meeting, several smaller work groups were formed—each to be led by one of the 13 steering committee members—including teams tasked with inventorying current available resources, devising outreach strategies, and reducing disparities. "We're really trying to take advantage of the energy and momentum around this work and have some concrete deliverables," says Berry. "The ONC recently released a strategic plan for the coming five years, and consumer engagement is one of the top five strategic priorities in ONC's plan."
However, as NeHC and the ONC work to improve public access to—and knowledge of—health IT, a word of caution is needed. Without some guidance, patients can often find misinformation online that could lead to misdiagnoses and/or self-medicating. Berry stresses that empowering patients with health IT is part of a bigger plan to enhance the relationship between patients and physicians—not to substitute it. "It's about informing and encouraging a better dialogue," she says. "Patients have to respect the [physicians'] expertise and yet be empowered to gather as much information as they can."
Berry expects the second meeting (next month) to serve as a reconvening of those smaller work groups to present one another and additional attendees with their recommendations for specific plans of action around these issues. In the meantime, she says, all workforces and steering committee members will be in close contact with one another.