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NeHC's new Consumer Consortium is promoting a new stakeholder agenda to improve patient knowledge
"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.
Looking even further into the future, Berry has several ideas of how health IT can educate and empower the public, and what that could eventually mean for the healthcare industry as a whole. She suggests resources that allow patients to make doctor appointments or order prescription refills from pharmacies online, databases that allow patients to keep track of their own health records, and apps that track blood sugar or other vital statistics in the same way a pedometer tracks your daily steps. "There are all sorts of ways that technology can be leveraged to help a patient better manage [their health] to avoid hospitalization or emergency visits," she says. "So we may spend a little bit more on medications but we'll spend a lot less on other downstream costs."
"We know that given how fast health IT is being driven, both by the government and the private sector, it's time to make sure the consumer is actively engaged in that whole process," says Berry. "We've been sort of focusing on the providers and everyone else, but no one has really focused on consumer engagement yet. With the ONC strategic plan, new technology, and health reform, I think many people would say that individuals are a huge untapped resource in terms of engaging in their own health and leveraging health IT. All those factors are coming to bear and it seems that what NeHC is doing is timelier than ever because of all those things."
Overall, Berry feels that the first meeting was a strong debut to what she says could become a multiyear project. "We had a number of participants who spoke with great passion from the perspective of patients, drawing on their own experiences of having been very ill and navigating that process," she says. "That voice was strongly present. We got the dialogue going. We had enthusiasm and excitement about the consortium across the board and a resounding yes—that these issues are important, that they are timely, and that this is a worthwhile endeavor."
In addition to the new Consumer Consortium, the National eHealth Collaborative has also recently unveiled NeHC University, a revamping and substantial expansion of its Nationwide Health Information Network (NHIN) University program. NeHC University will allow stakeholders to explore the broader health IT landscape and gain a more comprehensive understanding of the impact of health IT.
Classes at the new NeHC university will come in the form of webinars, some for free and others for a registration fee, that cover a wide range of health IT-related topics. For the Health IT Trends webinar, NeHC will be joined by health IT trends tracker Michael Lake to deliver a quarterly briefing on innovations, new developments, and trends in HIT, from discussions sof major business and policy developments to updates on health information exchanges and health IT initiatives and how they are transforming healthcare financing and delivery.