PharmExec Blog

Getting IT Together: Empowering the Patient with Health Information

Tasked with encouraging the widespread exchange of online health information, the new National eHealth Collaborative (NeHC) Consumer Consortium needs to hit the ground running, as CEO Kate Berry tells Jennifer Ringler.

To put health IT in the hands of patients, to foster more open communication between patients and physicians, to promote better health and wellness (and lower costs) for the public overall — these are the (somewhat daunting) objectives of the National eHealth Collaborative (NeHC) Consortium.

Headed by CEO Kate Berry and led by a steering committee that includes 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, the Consortium last week tasked itself with inventorying current available resources, devising outreach strategies, and reducing disparities.

The first goal is to pool resources and share expertise and best practices, explains 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.”

Second, the consortium is offering 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.

For the purposes of the Consumer Consortium, “Health IT” and “eHealth” are defined very broadly: any information that the general public can access regarding health, wellness, disease conditions, treatment options, and other information via websites, mobile applications, online databases and resources, and other tech tools.

By “enabling coordination and organization” NeHC “can have a greater impact than any one member or organization could on their own,” Berry says. “It serves as a neutral convener of all the interested stakeholders on this topic, so we’ve got pretty much everyone at the table.” 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.

Berry adds: “We’re really trying to take advantage of the energy and momentum around this work and have some concrete deliverables… 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.” She expects the second meeting (this July), to serve as a reconvening of the consortium’s 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 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 online 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.”

Overall, Berry feels that the first meeting was a strong debut to what she says could become a multi-year 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.”

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