HealthCare.gov and the challenge of making health-care data useful to consumers.
Even before health-care-reform measures mandating the largest changes to the industry go into effect, the Obama administration is hoping a little sunshine will start clearing up our confusing and fragmented system. On June 30, Health and Human Services Secretary Kathleen Sebelius unveiled HealthCare.gov, a site designed to provide information about health insurers and providers so Americans can make better health-care decisions and create a market incentive for offering better care at lower cost. “HealthCare.gov helps consumers take control of their health care and make the choices that are right for them, by putting the power of information at their fingertips,” Sebelius said in a statement. But how much information is too much?
More information is definitely needed. Patients have little data about their options in the current system, which leads them to make decisions about their care that do not always make them healthier and often cost them—and the insurance system—more than it should. Though various government agencies already collect a range of data on providers, it is often inaccessible to the public. Private insurers have been able to keep information about their practices hermetically sealed. The hope is that educating Americans to become better health-care consumers will create market pressures to provide high-quality care and bring down costs.
The current tools, while a step in the right direction, underscore the challenge of providing medical information to citizens who don’t have specialized health-care knowledge. The backbone of the site will ultimately be the portal through which people enroll in insurance when the exchanges come online in 2014. A forerunner to that resource is in place now, guiding people to existing insurance options in their state. Healthcare.gov also provides two other important tools: a resource with information on preventive services and a Hospital Compare Tool, with data about the quality of care provided at 4,725 facilities.
But the tools are also a reminder of how difficult it will be to make health information accessible and usable to those who are not health professionals. While persevering users will be able to glean some useful information from these resources, much of it may be confusing and overwhelming; most Americans are not equipped to decipher complicated information about health care. This will get easier on the insurance side once the exchanges are in place, and people can compare plans side by side. The quality side presents a bigger challenge, since patients do not always understand what treatments are most likely to make them well. Even doctors have limited information about what makes one treatment better than another, and the system has a bias toward treatments that use the newest (and most expensive) interventions. The one category that may mean the most to nonexperts—patient satisfaction—is not always a good indicator of how skilled at treating illnesses a doctor or hospital may be.
The Hospital Care Tool is the first of what will be several quality-care implements—a Doctor Compare Tool is expected in January 2011. It scores hospitals on 44 measures of quality based on data compiled by the Medicare program. Users can compare up to three hospitals at a time on factors ranging from adherence to certain surgery protocols to mortality rates for pneumonia or heart attack to how quiet they keep the wards at night.
In theory, this information is great, says Judith Hibbard, a professor at the University of Oregon who studies how patients use health information. But in practice, users see a sea of numbers without any indication of what measures are most crucial to improving their outcomes or explanation on how large a difference is meaningful. “When you get overwhelmed with too much information and all that numeric information,” she says, “people just turn off.” For the site to live up to the ideal of empowering patients, it also must help users interpret information and make better health-care decisions.
Perhaps because it is the easiest for users to understand, the table that comes up first during a basic hospital comparison is based on a survey of patients about their hospital experience, data collected as part of hospital surveys. “If you don’t understand that there are serious quality gaps” between hospitals, Hibbard says, “then it makes sense to look just at the [patient] ratings.” But whether patients respond that they would “definitely recommend the hospital” to others may be based more on how attentive doctors and nurses were, not on whether they provide the care most likely to cure an illness. In other words, a hospital that has the most attentive staff or provides the most aggressive treatments may receive a higher patient-satisfaction rating than one that most closely adheres to best practices and uses the treatments that will most efficiently make patients well.
Hibbard thinks the site should move toward a simpler system that produces a summary score synthesizing all the information for patients into a more basic level, like assigning each hospital a number of stars. But Chip Kahn, president of the Federation of American Hospitals, thinks that may be too reductive. “We’re not at the point where a government-sponsored Web site can put up stars and be assured that there is a [real] incremental difference between a hospital with three stars and a hospital with four stars,” he says.
Providing easy-to-use tools for the general public may still be a ways off, Kahn says, but the site could benefit consumers in other ways. For instance, gathering and publishing data on all hospitals will create competitive pressures and lead to raised standards. On the insurance side, experts say, compelling insurers to release the information needed to create even this early tool is leading to unprecedented transparency.
As it currently exists, the health-care system is oriented toward serving the insurers and providers first, not patients. But as the tools at HealthCare.gov grow and the other regulations go into effect that make it easier for the administration to pull together meaningful data, that could change. Even if the consumer can’t yet make sense of all the information, it’s enough to know that having the data out in the open is a very healthy thing.