Opening the ‘black box’ of health care data

Recent efforts by the Centers for Medicare and Medicaid (CMS) provide clinicians, health plans and consumers with ready access to health data that was never before possible. In fact, CMS released millions and millions of lines of data that reveal important information regarding physician payments, prescribing patterns and geographic distribution of health care costs.

But how helpful is this information to the everyday health care consumer?

A recent Engelberg Center for Health Care Reform event, Enhancing Health System Transparency through Meaningful Data Releases, discussed the value of health care data as it relates to transparency; a popular term that refers to the availability of free and open sources of information on health care costs, procedure prices, drug prices, etc. The goal is to offer consumers the opportunity to research and compare services in the health care marketplace, much like we can now in just about every other market. For example, there are few resources out there that offer the simplicity and user-friendly approach of a Consumer Reports tool, when attempting to find a high-value physician to perform a hip or knee replacement surgery. Of course, health care is a far more complex product, but the data sources simply do not exist in this easy-to-use format.

Ensuring that consumers have access to relevant health data is especially critical in the current insurance market, since consumers are now beginning to have more “skin in the game.” For a long time consumers overlooked health care cost information that was taken care of by a third party (i.e., their health insurance plan), but more and more employer-based plans and the new ‘Obamacare’ health exchanges are shifting these costs directly to enrollees. For example, consumers are experiencing significant increases in how much they are required to pay at the point of receiving a health care service, such as a standard blood test or an X-ray. As a result, consumers are becoming more conscious and discerning when it comes to the cost of care, especially as prices for the same services can vary dramatically across providers.

The Current State of Health Care Data Transparency

Many organizations are in the midst of a big push towards transparency in health data, as demonstrated by this partial list of online health care data sources. However, most experts acknowledge that health care data transparency is still in its infancy. The day when consumers can access data in the right form, at the right time and in the right context, to allow meaningful comparison and informed decision-making, is still a long way away.

Health care consumers searching for the “best” doctor must sort through scattered sources of information on cost and quality from multiple sources. The reliability of these sources is too often opaque, rendering the decision-making process overly complex and confusing. In fact, a recent study found that consumers perceive word of mouth from family and friends as being more important when selecting a provider, as opposed to a provider’s website rating.

A Vision for the Future

The experts expressed several broad opinions about how to increase transparency for health care consumers:

Provide Meaningful and Interpretable Data

When it comes to health care providers, consumers have important preferences about the information they would like to receive. This is critical because patients will not benefit from data if they ignore available information as irrelevant. One advocate suggests that consumers value doctor ratings based on patient surveys more than data from board certifications or performance on quality and efficiency guidelines. Equally, consumers value data on safety and error ratings, diagnostic skills, health outcomes and out-of-pocket costs.

Customize Data

A recent U.S. Government Accountability Office report highlighted that consumers value information that is not only easy to understand, but also relevant to their specific circumstance. Experts agreed that health care transparency tools should enable consumers to customize data. For example, ProPublica’s Prescriber Checkup tool allows consumers to look up a provider’s prescription habits by drug, state, specialty, or physician name.

Integrate Health Care Data Sources

Health care data is fragmented across various websites administered by public and private organizations, which makes it difficult to gain a full view of a single provider’s practice. For this reason, most experts suggested integrating all publically available health care information in a single data repository to allow consumers a 360 degree view. This would require the implementation of data standards across every part of the health care system, and would only succeed with strong support from a range of stakeholders in the public and private sector.

Achieve Private Payer Buy-In

The government has taken significant strides toward releasing health care data, following an “open data policy” enacted in 2013. Although government data has questionable utility, many private payers, according to some experts, still have to join in on transparency efforts. The private sector may fear that releasing information on provider charges may hurt their ability to negotiate prices and benefit their competitors. However, government transparency initiatives are starting to have some trickle-down effect on the private sector. For example, the Health Care Cost Institute a network of large national and regional commercial health insurance plans- announced its plans for a transparency initiative that will begin in 2015.

The future of meaningful health care data transparency holds a lot of promise and will continue to evolve over time. A forthcoming brief will provide important details and recommendations for how to achieve the visions outlined here.