“Meaningful Use” Means Including Patients

Posted June 15, 2009 by Lygeia Ricciardi 

A topic of recent and ongoing debate in Washington DC is the definition of the phrase “meaningful use” as it applies to electronic health records (EHRs). And discussion is likely to heat up tomorrow as the Department of Health and Human Services (DHHS) Health IT Policy Committee releases a draft definition of the phrase.

“Meaningful use” is important because medical practices that hope to benefit directly from the roughly $17 billion dollars in the economic stimulus package (the American Recovery and Reinvestment Act, or ARRA) designed to encourage them to adopt technology will have to use a “qualified EHR” in a “meaningful manner.” Those that do so will be eligible to receive incentive payments of $40K-$60K each via Medicare and Medicaid premiums over a five-year period.

The definition of “meaningful use,” however, was purposefully left vague in the law, though it does specify that it must include the ability to do e-prescribing, health information exchange to improve the quality of care (e.g. care coordination), and the reporting of quality and performance measurements. The rest of the details are up to DHHS.

With so much money at stake, the ultimate definition will likely shape the development of EHR products, as well as the way healthcare is practiced, for many years. So of course hundreds of parties have been formally and informally weighing in—with a predominance of healthcare providers, vendors, and others with a financial stake in EHRs and the established healthcare system. 

In April the National Committee on Vital and Health Statistics (NCVHS), which advises DHHS, held hearings on the topic. Numerous others have opined online. But patients and consumers have been, in my opinion, largely under-represented. As David Kibbe put it on the HealthCare Blog,

“It may have been an oversight, but patients and consumers have been left very much on [the health IT part of ARRA’s] sidelines. The attention and the money is squarely aimed at the health care providers - doctors, clinics, and hospitals. The Act's intention is to create "interoperable" electronic health records that, in the future, will be more accessible to them: doctors, clinics, and hospitals.” 

I think the point has merit, both generally and with respect to “meaningful use”. There have indeed been efforts to insert consumer/patient needs into the “meaningful use” debate, but it’s not clear that this input will be enough to tip the scales.

For example, in addition to six other principles, the Markle Foundation, with a wide array of signatories, included in its “Framework for ‘Meaningful Use’ and ‘Certified or Qualified’ EHR” the following: “Consumers, patients, and their families should benefit from health IT through improved access to personal health information without sacrificing their privacy.” 

That’s an excellent starting point—and one voiced far too rarely--but what does it mean in practice?

The Consumer Partnership for eHealth (CPeH), a group of consumer, labor, research and policy organizations, today issued its own more granular statement on "meaningful use" as it applies to consumers and patients. (Full disclosure: I participate in the Consumer Partnership for eHealth’s work as an individual, though not as a representative of Project HealthDesign or any other organization.)

The CPeH lays out a set of general expectations or aspirations for patient-centered healthcare, and links each with some specific ways in which these might be translated into meaningful use requirements over time. Among the desired functions or capabilities for EHRs highlighted by the CPeH are the following:

• Patients have real-time electronic access to their medical record along with linkages to tools that make the information meaningful and useful to them. 
• A care summary is generated and shared with the patient and other authorized providers and family caregivers after every visit or discharge.   
• Reminders about preventive services, medications, necessary/routine tests, and follow-up care are sent to patients via their preferred medium.Connections are made to community resources (online and offline groups, support programs, community services, social services, etc.)
• Connections are made to community resources (online and offline groups, support programs, community services, social services, etc.)  
• Data regarding cost and the clinical quality of care are electronically collected and publicly reported for consumer use.   
• Patient generated data is incorporated into the clinical context for individualized care.

That last point is essential based on Project HealthDesign’s learnings about the importance of patient generated data, which can be used both for the direct care and benefit of patients themselves, and for other purposes, such as quality measurement and research – as exemplified by PatientsLikeMe. The integration of patient generated data (including ODLs) is a key emphasis of the project’s second round of grants.

Another point that especially resonates with Project Health Design’s experience is the importance, which is cited a couple of times throughout the CPeH document, of customizing messages and communication with patients in ways that respond to their unique needs, whether related to primary language spoken, cultural background, or preference in modes of communication (visual vs. audio, frequent vs. infrequent, etc.). Project HealthDesign’s grantees in its first round put a lot of care into learning directly from patients and incorporating their needs into product designs and modes of communication.  

While some of the functions or mileposts laid out by the CPeH seem rather far-fetched considering where the health system is today, the definition of “meaningful use” can and should evolve over time. Articulating these longer-term goals on behalf of consumers will, I hope, encourage the healthcare system and EHR developers to push the envelope in a way that leads to a much more patient-centered vision (and reality) of care.

What do you think? Are there other functions or requirements that would support patients’ and consumers’ “meaningful use” of health IT? And how do you think a stronger patient emphasis can be most effectively championed in a sea of other voices? 

Comments

[Lygeia Ricciardi]

Have a look at the preliminary definition of "Meaningful Use" of EHRs: http://tiny.cc/IY8SP

Public comments on the definition--which does include a number of explicitly "patient related" points--are due by Friday June 26th. Comments must be under 2000 words. Follow the link above for instructions.