Developing national standards for anything in the U.S. is a huge undertaking. And doing so to create a data infrastructure that would support consistent performance measurement activities to improve the quality of American healthcare seems almost unattainable.

But the Joint Commission (Oakbrook Terrace, Illinois) has taken a first step in that direction by issuing a public policy report that focuses on a data "super highway" that allows for data sharing and linkages and operates under an agreed-upon set of rules and governance structure.

Although a great deal of information already is collected from hospitals and Medicare, the new report pushes the need for data provided to practitioners as well.

"We want to be able to look at performance from all types of providers, including practitioners," Margaret VanAmringe, MHS, the commission's VP for public policy and government relations, told Medical Device Daily. "We're going to have to merge different types of data. There are numerous holders of information and we need to have databases that can talk to each other."

Healthcare organizations, practitioners, purchasers, oversight bodies and the public all rely on performance data to determine priority areas for quality improvement. But most performance measurement efforts operate in isolation from one another and are rarely a consistent picture of overall quality.

A special Joint Commission team published its first white paper, "Development of a National Performance Measurement Data Strategy," that details 22 principles for the development of a national performance measurement data strategy, and identifies three strategies to guide the efforts.

"If you want to be able to look at how a patient receives care, as they are moved from being an inpatient to outpatient and even home care, you have to be able to pull data from all these sources," VanAmringe said. "As we build capacity to automate clinical data, we also want to share information on quality."

Doing this requires data quality standards.

"We have to insure that when we find two records, and we think that they are the same, that we can be sure it's the same person. To do that, practitioners need to keep information on their patients' demographics up to date so that we can double check and make sure we're getting the right person."

Given the sluggish adoption of electronic health records (EHRs) by healthcare practitioners and organizations alike, the effort to develop broad-based national data and performance standards is a major challenge, to say the least.

"We know that we don't have interoperability of EHRs," VanAmringe said. "We've been working to attain those standards. There's no sense building or even trying to move toward a consolidated picture of performance if we can't pull those data together.

"We want to be able to exchange comparable data and data that can be aggregated. If we don't think about including data on quality and performance, you could end up not having the information you really need because it's not incorporated in the EHR."

But VanAmringe explained that EHRs are only one part of the picture.

"We also need standards that deal with privacy, ownership of data, who can access it, and how to identify the data," she said. "There's so many issues that we haven't developed or even started to think about how to develop the standards. We have to begin this process now."

The Joint Commission's roundtable that produced the report suggested three broad strategies to guide national performance measurement efforts:

  • Creation of a framework for a national performance measurement system that meets the needs of all users and stakeholders to include standardizing measure definitions and data collection processes to produce comparable information. Such a national system for performance measurement data would be assured through sustainable funding from private and public-sector sources.
  • Building a data highway to support the exchange of health information with interoperability that would permit data exchange and aggregation. Information technology systems, such as EHRs, must be designed to support performance measurement activities and relieve registered nurses and other clinicians from the burden of digging through paper patient records to obtain the needed data.
  • Addressing privacy of personal health information issues. This includes educating patients on the options and risks inherent in data sharing, and the value of performance measurement.

But didn't HIPAA already create national standards to protect individuals' medical records and other personal health information?

According to VanAmringe, HIPAA may not be enough.

The group's ambitious plan has been strategically released at a time when a new presidential administration is about to take over a time when initiatives get lost in the changeover.

"We want to raise the consciousness about the importance of this," she said. "We'll try and make sure the report is broadly disseminated. We've sent it to key policy makers and publicized it. All of the major healthcare groups we know who are dealing with these issues are receptive. The big players are very concerned."

Developing, implementing, enforcing and maintaining data and performance standards is a huge job and the group is already floating the idea of a new entity to be a national data steward.

"We need rules of the road on how we are going to share information. There either needs to be a new organization or we need to give existing structures the challenge to do this. If there's a new entity, it would need some funding to get going."

The report's authors suggest it will take a lot more than funding to achieve the proposed goals: "Eventual success will require concerted and collaborative effort guided by the principles set forth herein by all of the parties at interest, as well as the investment of resources so often lacking in the past. In the end, doing all of this is simply a matter of will," the report concludes.