Big Gamble: Will Stimulus Dollars Pay off in Health Information Consumers Can Use?

by Joshua J. Seidman , PhD

Getting a return on health IT investment will require that patients receive information that helps them improve their health.

At a late February government affairs retreat of the eHealth Initiative (eHI), shortly after the passage of the American Recovery and Reinvestment Act (ARRA), the expected enthusiasm at the passage of the act’s health IT provisions was tempered by some cautionary notes. With the federal government injecting tens of billions of dollars into health IT, the world of health information now is, at least partially, on the hook for systemwide quality improvement and cost containment.

If five years and tens of billions of dollars down the road, health IT has been broadly implemented across the country but cost escalation continues at the same pace and the US still ranks around 37th among industrialized nations in quality,¹ what will policy makers and researchers conclude about investment in health IT?

One of the conclusions from the eHI retreat was that part of making sure we get substantial delivery system improvements is figuring out how to engage consumers in productive use of health IT. “Engaging consumers” was one of the top three priority areas identified by the dozens of eHI members in attendance. (Privacy and standards were the other two priorities.)

Perhaps more importantly, the legislative language makes clear that one of the key purposes of the act is that it “advances the delivery of patient-centered care.” Part of laying that foundation includes some in-depth analysis about what it means to get consumers engaged in managing their health. It is imperative that principles such as patient-centered care get translated into policies that actually help to deliver it.

ARRA is somewhat thin regarding how to accomplish patient-centered care. Not surprisingly, the law—given the lightning speed, by congressional standards, with which it was written—left a lot of details to be determined. Many of the decisions that the Department of Health and Human Services (HHS) will make over the next year, with guidance from the newly formed Health Information Technology Policy Committee, could go a long way to addressing consumer needs with respect to health IT.

Meeting Consumer Health Information Needs

HHS must do more than “foster the public understanding” of health IT, as ARRA prescribes. HHS can go further and deeper by developing strategies to better understand consumers’ health information needs, thus ensuring that health IT evolution actually addresses those needs directly and comprehensively.

The Institute of Medicine defines “patient-centeredness” as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all decisions.”² If we apply that definition to information technology, we can think of patient-centered health IT as tools that support the specific needs of consumers—whatever their situations and needs—as they seek to manage their health and make informed decisions.

ARRA references various bodies that will promote health IT evolution in various ways, such as the health IT policy committee, a research center, regional extension centers and state (or state-sanctioned) entities. Presumably (and importantly), much of this support will provide technical assistance for provider implementations.

There should also be emphasis on providing technical assistance and promoting technologies, content, and best practices that facilitate proactive delivery of timely information to consumers. These efforts should facilitate strategies and initiatives that translate clinical and administrative data into understandable, usable, meaningful information for consumers that is presented in plain language text, graphics, audio, and video.

To be more specific, through these various centers and committees, and in providing health information exchange guidance and fulfilling ARRA’s mandate for consumer access to electronic health records, several opportunities exist for more effective consumer engagement in health IT:

• Conducting focus groups and structured interviews with consumers to better understand where health IT can serve their health needs
• Designing content, tools, and interfaces to support different consumer health needs
• Creating toolkits for consumer outreach
• Devising strategies to engage clinicians as advocates for shared use of health IT tools with their patients
• Demonstrating how clinical and administrative data sources can be translated into meaningful, usable, actionable information for consumers

“Meaningful” Health IT

Among the most important health IT provisions in ARRA is the requirement that physicians demonstrate “meaningful use” of electronic health records (EHRs) in order to be eligible for up to $44,000 in adoption incentives. At a Health Affairs briefing in Washington, DC, in March, panelists provided thoughts on the meaningful-use carrot.

For example, Farzad Mostashari, MD, who heads New York City’s Primary Care Information Project, suggested that HHS must create high expectations for meaningful use to ensure that clinicians are not just automating ineffective care processes. Mark Smith, MD, MBA, president of the California HealthCare Foundation, argued that health IT success hinges partially on addressing the “maze of regulations that protects incumbents in health care” because “the purpose of [health IT] is not to wire the incumbents to do everything” the wrong way.

These perspectives are absolutely correct, but we need to go even further. Specifically, “meaningful use” should address the question, “Meaningful to whom?”

Ultimately health IT is a means, not an end. The goal is more efficient, less expensive, and better health and healthcare for consumers. Therefore, clinicians should get credit for EHRs that provide “meaningful” information to consumers. If health IT tools are not helping consumers make better decisions, effect positive behavior change, and manage their health, the tools are not meaningfully changing healthcare.

Meaningful consumer tools could include personal health records that embed links between the individual’s personal health data (e.g., cholesterol lab values) and content that explains what the data mean and why they are important (e.g., explanations of the effect of high cholesterol for various chronic conditions and normal ranges for cholesterol values).

Both the health IT policy committee and the HHS secretary will set the specific parameters of the “meaningful use” definition. Given the enormous investment that the federal government is making through Medicare and Medicaid incentives to physicians, it is fair to expect that the funds flow for technology that truly improves patient care by connecting consumers to the health information they need to lead healthier lives.

ARRA’s pressing implementation timetable—a reality caused by both the urgent need for economic recovery and the dismal state of the country’s health IT infrastructure—will make it difficult for these consumer perspectives to stay top of mind for HHS. However, it is imperative that HHS not lose sight of consumers’ healthcare and health information needs if it wants this health IT capital investment to lay the groundwork for an effective overhaul of the healthcare delivery system.

If HHS and the committees that advise it emphasize this kind of consumer orientation, it will go a long way toward ensuring that we have something positive to show for our big gamble on health IT. Thinking through the issues of patient-centered care on the front end—for example, how to promote shared decision making, chronic care self-management, and the use of understandable and meaningful personal health records—could result in huge payoffs in health and healthcare.

Notes

1. Davis, Karen, et al. “Mirror, Mirror on the Wall: An Update on the Quality of American Health Care through the Patient’s Lens.” The Commonwealth Fund. April 2006. Available online at www.commonwealthfund.org/Publications.aspx.
2. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press, 2001.

Joshua J. Seidman (jseidman@ixcenter.org) is president of the Center for Information Therapy in Bethesda, MD.