Nutrition labeling is a transparency effort that has been heralded as a success. “There is a large body of evidence that says, for specific consumer effects, labeling has positive effects on behavior in terms of improving diet and changing food selection criteria,” said David Weil, an economics professor at Boston University’s School of Management.
He added that a number of companies are now working on information technology systems that will allow users to receive more comprehensive nutrition information using a cellular telephone or personal digital assistant. Such systems could be tailored to users who have concerns about allergies, nutritional content, product recalls or contamination.
“Imagine your cell phone buzzing if you scan an item that has something your child is allergic to or if it lets you know if that item really came from an organic supply chain,” Weil said. “The opportunity to get that kind of information is something that IT is making more and more possible.”
But even though technological breakthroughs open new possibilities for transparency, Weil said, even the most sophisticated gadgetry will still require knowing what information users need, when they need it and how they use it.
“As the Internet expands, the challenge of breaking through the fog, of creating a platform that gets health care information out there when people need it and really takes advantage of achieving objectives of health care policy — that becomes the real challenge,” he said.
— Kayt Sukel
Many lawmakers and academics believe that the more information people have about the creation and implementation of public policies, the more effective those policies will be. But such efforts at transparency require a thoughtful approach.
In the health care arena, the federal government recently announced it would rate how well agencies promoted public access to data on health care cost and quality. Moreover, some states require hospitals to publicly disclose statistics about cardiac surgery outcomes.
The idea behind such programs is that when consumers face the need for surgery, for example, they should have access to the information necessary to select the right hospital and surgeon for them. In theory, access to that data should benefit both hospitals and patients.
In reality, though, some facilities turn away high-risk patients to avoid lowering their outcomes, which undermines the programs’ integrity.
In contrast, the Cystic Fibrosis Foundation’s (CFF) voluntary performance system to rank the quality of treatment centers had a different outcome. The foundation, which has collected health-related data via a Web-based system for years, found that the decision to go public with treatment center rankings inspired other organizations to improve their overall quality of care.
Why did transparency systems with similar aims achieve such different results?
“Knowing you will be ranked can be a very powerful motivator to improvement,” said David Weil, an economics professor at Boston University’s School of Management and a research fellow at Harvard University’s Taubman Center for State and Local Government. “This kind of pre-emptive effect of transparency in health care can be really powerful if you can get the right measures. The irony in a transparency system is that it creates the incentive for people who disclose information to change behavior in a positive way but can also create a situation where people may manipulate behavior to game the system.”
Transparency project
Weil and colleagues Archon Fung, an associate professor of public policy at Harvard’s John F. Kennedy School of Government, and Mary Graham, a visiting fellow in governance studies at the Brookings Institution, established the Transparency Policy Project to examine the positive and negative effects of information disclosure on the effectiveness of public policy.
“We’re focused on targeted transparency, not just letting the public know what’s going on in government decision-making,” Weil said.
The project examines policies that involve informing the public of critical information about a service or organization and how those policies are implemented in government-mandated systems.
The project uses case studies and data analyses to answer questions such as: How can the right information make laws and public policy more effective? How can the release of pertinent, standardized information help public policies regulate safety and quality control in complex industries? And where and how might information technology systems assist in those endeavors?
Fung, Graham and Weil recently published a book, “Full Disclosure: The Perils and Promise of Transparency,” that discusses the findings of their first five years of research. In the book, they identify areas in which transparency policies have worked well and areas in which they have not. Many of their findings are applicable to current trends in the area of health IT.
The right kind of data
One of their key findings is that disclosing information helps no one if it is not the right kind of information. Weil said the crux of any successful transparency policy is understanding what kind of data consumers need to make decisions.
“Whether it’s health care cost containment, improvement of quality or diffusion of best practices, our fundamental insight is that you have to understand how users are making decisions and what data drives those decisions,” he said.
By developing that understanding, organizations can create effective policies that won’t overwhelm users.
CFF’s ranking system is an example of a transparency system that understood the kind of information its users wanted.
But Weil said finding the right information is a complicated process that requires extensive upfront study.
“If you give people highly technical information or just provide an avalanche of information, there’s a lot of evidence that consumers don’t know how to use it,” Weil said. “But on the other hand, if you oversimplify or focus on the wrong outcome measures, it’s also counterproductive.”
Beyond defining the right information, the next issue is getting data to consumers when they need it. Weil said IT systems can help.
“The good news is that IT lowers the cost of disseminating and gathering information,” he said. “Because of that, you can have transparency systems that are much more flexible.”
In the case of CFF’s system, the use of Web-based data entry makes it easy for participating hospitals to send data for inclusion in the ranking report.
Furthermore, posting the data on the Internet makes it relatively easy for consumers to view the rankings.
However, Weil said, future transparency systems should not only provide intermediate and final outcomes but also allow consumers to describe their experiences with health care organizations or services to give the most accurate picture.
“In the [severe acute respiratory syndrome] scare, the formal system of reporting didn’t do very well,” he said. “There was this whole problem of the Chinese government not wanting to disclose information of the prevalence of SARS. But a lot of the information that did come out did so in a decentralized fashion — from voluntary systems, e-mails, blogs and other things.”
He added that public health systems must be able to accept information from users. “We should take advantage of the information revolution and integrate it into transparency systems,” he said.
From the battlefield to the home front: Managing medical data
Government Health IT presents Col. Claude Hines Jr., program manager for the Defense Health Information Management System, in this recent InSight eSeminar. Col. Hines discusses the health information technology and tactical challenges faced by the military medical community in Iraq, Afghanistan and other areas of conflict. In doing so, he describes the current information technology solutions for transferring clinical data between battlefield care givers to health care personnel at military treatment facilities worldwide.
