Last night I posted my own thoughts on the definition of “meaningful use,” a term that will have significant impact on our next-generation medical records systems. To me it’s vital that the term be defined to include full access for you and me (patients) to our own medical data.

I’ve come to the conclusion that we have a terrific ally in this conversation, the Markle Foundation. They recently released a paper that I think is a great contribution to this effort.

I’d never heard of them until December, when Markle’s Claudia Williams posted a comment on my other blog. I’ve since learned that Markle does a ton of good work studying good uses of health IT. And from what I can tell, they’re aligned with the goals of the Society for Participatory Medicine.

That’s reflected in a paper released on April 30 by Markle Connecting For Health, titled “Achieving the Health IT Objectives of the American Recovery and Reinvestment Act: A Framework for ‘Meaningful Use’ and ‘Certified or Qualified’ EHR.” (Claudia chairs that group.) It’s a 19 page PDF, available free on the Markle site. I recommend it.

For our purposes here, as a patient-level blog, here are a few excerpts which I think give a good sense of Markle’s view. The text between the dashed dividers is pasted from the document. I decided not to putting in a slew of “…”; for full text, see the source. The words are theirs; the boldface emphasis is mine.

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Overview consensus statement

Under the auspices of Markle Connecting for Health, the signatories below have agreed on the following Seven Principles for Meaningful Use and Qualification or Certification of EHRs:

1. The overarching nationwide goals of health IT investments are to improve health care quality, reduce growth in costs, stimulate innovation, and protect privacy.
2. These goals can be achieved only through the effective use of information to support better decision-making and more effective care processes that improve health outcomes and reduce cost growth.
3. Meaningful use should be demonstrable in the first years of implementation (2011–12) without creating undue burden on clinicians and practices.
4. The definition of meaningful use should gradually expand to encompass more ambitious health improvement aims over time.
5. The definition of “qualified or certified EHR technology” should support the goals of meaningful use, security, and privacy.
6. Metrics for achieving meaningful use should account for the heterogeneity of the U.S. health sector and allow for a broad range of providers to participate.
7. Consumers, patients, and their families should benefit from health IT through improved access to personal health information without sacrificing their privacy.

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Section 2: Proposed Simple Definition of Meaningful Use

Patient-Centered, Meaningful Use of Health IT:
Demonstrates that the provider makes use of, and the patient has access to, clinically relevant electronic information about the patient to improve patient outcomes and health status, improve the delivery of care, and control the growth of costs.

Initial Meaningful Use Requirements (2011-2012):
Demonstrates that the provider makes use of, and the patient has access to, clinically relevant electronic information about the patient to improve medication management and coordination of care.

The Path Toward Early Progress Should Begin with Information That Has the Greatest Potential to Achieve the ARRA Goals
Given current economic urgency and ARRA‘s statutory deadlines, the HHS Secretary should focus initially on encouraging the use of information that:

1. Has the highest potential impact on health improvement and control the growth of costs.
2. Can be achieved with current technologies and made available at the point of care in standardized electronic formats in the near-term.
3. Includes flexible requirements that enable a broad range of providers and patients to benefit.

Based on these criteria, we recommend an initial focus on the use of standard information types or packages for recent medication histories, recent test results (particularly laboratory values, and when available, imaging and pathology text reports), and care summaries. These three classes of information hold significant potential compared with many other types of health information for improvements in coordination of care, medication management, and reduction in duplicative services.

Section 3: Validation of meaningful use

The approach to validating meaningful use in the three areas designated in ARRA should:

• Allow for a broad range of providers to participate through a variety of mechanisms. A range of metrics and validation mechanisms will be needed to enable a wide diversity of providers in different practice settings and with varying systems — including primary care providers, specialists and hospitals — to demonstrate meaningful use.
• [Be] clear and achievable. The metrics and the approach used to validate them should be clear and goal-oriented, and be achievable whenever possible through automatic reporting from electronic systems to avoid creating additional unnecessary reporting burden for clinicians.
• Motivate information use to improve health, but not over-specify how to get there. The metrics should not focus on specific features and functions of technology or software, but rather on the use of information to innovate care processes that improve care coordination and medication management.
• Stimulate market innovation and “information rich” health IT adoption and use.

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Phrasing that I particularly like

support better decision-making and more effective care processes that improve health outcomes and reduce cost growth…

recent medication histories, recent test results, and care summaries.

I’m glad to see specific goals cited. Without a focus like this, it’s like boiling the ocean: progress is very slow, and it takes forever to get to where the effort pays for itself. (Meanwhile, critics delight in saying “See, I told you we never should have tried.”)

“without creating undue burden on clinicians and practices. …

be clear and achievable….

not over-specify how to get there”

My experience in industry is that mandates only get accomplished if they’re achievable, and if the various players have enough latitude to get it done without turning themselves inside out.

My company’s quarterly performance system uses the SMART method: Specific, Measurable, Achievable, Relevant and Timely. In the few discussions I’ve had with physicians about EMR adoption, they’ve overwhelmingly talked about how unproductive the systems were. The changes we need will not happen if the systems aren’t designed to be worth the effort.

Consumers, patients, and their families should benefit

Thank goodness SOMEbody mentioned the supposed beneficiaries of all this work! Without that criterion, anyone working on the project could declare victory without a single bit of benefit to you and me.

My concerns

While the direction of all this seems perfect to me (and I do mean perfect), I have concerns that there might still be some weasel wording that could leave an out, such that we don’t get what we need.

7. Consumers, patients, and their families should benefit from health IT through improved access to personal health information without sacrificing their privacy.

Just “improved access”? As written, that could be fulfilled by any change, no matter how small. Why not “full access”?

“the patient has access to clinically relevant electronic information”

I don’t see why this has the qualifier “clinically relevant.” If there’s a dispute, could this be used to withhold information by claiming it’s not “clinically relevant”?

All in all, though, I’m very happy to find this document. (Thanks to Google Health’s Roni Zeiger for being the first to steer me to it.) Frankly, it takes a load off my mind to know that Markle Connecting for Health is doing this work.

I’ll close with one final concern:

Initial Meaningful Use Requirements (2011-2012): … improve medication management and coordination of care.

I’ll be blunt: good heavens, is that really all we think we can achieve in THREE YEARS? Improve medication management and coordination? With $19 billion of incentives??

If so, it deepens my sense that if you and I want to improve our odds of surviving a care encounter optimally, we had better not wait for the industry to get better. Even more than I realized, we need to be actively engaged in every aspect of our care. And that’s participatory medicine.

And it deepens my resolve that we must mandate, in the definition of meaningful use, full patient access. If it’s not required, it’s not gonna get done. And participatory medicine requires it.