But even while the comment period was still open, the Office of the National Coordinator for Health Information Technology (ONC), which produced the draft, had been busy explaining its rationale and selling the plan, which is based on a November 2011 Institute of Medicine (IOM) report about the role of health IT in delivering safer care.
Notably, ONC officials, led by Lygeia Ricciardi, director of the ONC Office of Consumer eHealth, and national health IT coordinator Dr. Farzad Mostashari, put their thoughts down in rather permanent form in the pages of policy journal Health Affairs. (The February issue carries the theme "New Era Of Patient Engagement.")
The draft follows what ONC calls its "Three A" strategy: access to health information, enabling consumer action with that information, and a shift in attitudes "so that patients and providers think and act as partners in managing health and healthcare using health information technology," the Health Affairs article read. "These three elements of the strategy are interdependent."
The office, which is part of the U.S. Department of Health and Human Services (HHS), said that programs like Meaningful Use, for encouraging adoption of electronic health records (EHRs), and the Blue Button initiative, to make it easy for people to download copies of their own records, help provide access to data.
For enabling action, ONC said it has been supporting developers of e-health tools and helping to create trust in online access to health information by promoting privacy; for example, by developing a "model privacy notice" for vendors to attach to personal health records (PHRs). "Similar to a 'Nutrition Facts' or 'Drug Facts' label, the model notice is intended to present complex information about the privacy of health data in an accessible, standardized and transparent way," the ONC officials wrote.
ONC said Microsoft has voluntarily adopted the notice for its HealthVault PHR, as has NoMoreClipboard.
The third piece, changing attitudes, may be the most esoteric and difficult. "This final part of the Three A's strategy supports the evolution of consumers' and providers' expectations about roles relative to each other, leading toward a less hierarchical, more collaborative partnership, enabled by e-health," ONC said.
"For example, patients need to feel comfortable requesting electronic access to their health records, asking providers questions, sharing their own health knowledge and weighing in on treatment options. A cultural shift -- among patients and providers -- is necessary to support these kinds of behavior."
Ricciardi and her colleagues acknowledged the reality of the challenge they and the provider community face in engaging patients with health IT. "Engaging patients and their caregivers to play an active role in their health is a critical element of patient-centered care, yet patients are an underused resource in the healthcare system," they wrote.
"Although additional research in this field is needed, surveys indicate that a majority of both patients and providers support using health information technology to improve patient care and prefer computerized means to share patient information with each other. However, relatively low numbers of patients have asked for their information in an electronic format," ONC noted, citing a 2011 Markle Foundation study.
But success would result in a big payoff, according to the ONC officials. "Giving patients both access to their health information and electronic tools for using that information can better position them to participate more fully in their care: to self-manage their conditions, coordinate care across multiple providers and improve communication with their care teams -- those directly involved in their care," the article read.
ONC further noted that various studies have indicated that patients engaged in their own care and management of their health conditions tend to have better outcomes, and that engagement can help reduce health disparities among historically underserved communities and even help close the "digital divide."
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