Wyden Remarks at Joint AARP-BRT Event on Data Transparency in Health Care

As Prepared for Delivery

I have had a real interest in health care data transparency for years. The way I see it, data has the capacity to completely change the health care landscape in this country. Data can personalize care in ways that have never been done before. We already know that the same treatment can have very different impacts on patients based on their genes, their behavior and where they live.  With access to big datasets about patients they treat, doctors are beginning to find ways to tailor their treatments to meet these unique needs. Giving these innovators access to Medicare data will surely increase their analytic firepower. Sometimes proprietary rights over datasets and analyses can create silos, limiting access to information those who treat us should have. In the blink of an eye, big data can knock down these health care silos connecting providers across settings and states.   It can put patients and consumers in the driver seat of their own care.  And it can help doctors identify patterns, in real time, to deliver better care. 

Data can enable all of these things, but right now the status quo limits providers, patients, and consumers to a world still using ‘dial-up’ rather than high-speed internet. It’s time to throw out the floppy disk.

There’s a role for all of us represented here today to play.  Specifically, I see three opportunities: 

1. Those of us in government need to knock down barriers keeping health care data walled off from the public, and identify data that we’re not even collecting but should be.  All while protecting patient privacy. For example, doctors often have no idea of the full spectrum of treatments their patients are receiving. That’s why in the SGR bill we proposed to get data out to doctors about the care their patients are receiving in other settings and from other providers. It’s yet another reason we need to pass SGR repeal and reform now.
2. Innovators, entrepreneurs, researchers and providers should be able to use that data, and create new possibilities that no one has thought of yet.  After all, millions of people didn’t know they needed an iPhone until Apple made one.  By empowering the market with this information, patients will benefit from new opportunities to engage in their health like never before. Companies like Castlight are already getting price information out to consumers to help them make better choices. But government should not try to put walls around thoughts innovators haven’t even had yet.
3. And finally, making sure that people understand more about their health – and their health care choices - will change the face of health care.  Access to data, and transparency for transparency’s sake, isn’t enough. This information should be a powerful resource for consumers, employers, providers and payers – but only if they use it. 

Sen. Grassley and I first introduced our legislation to open up the Medicare claims database in 2011and have been pushing for greater access to it ever since.  Today, we are taking the next step to achieve the first “opportunity” with your help.  We are asking stakeholders – like those of you here today - to help us think through what the future of health care data should look like.  With your help, we hope to pinpoint what’s standing in the way of increasing data access and transparency, while identifying ways that data can be most useful.  I would encourage all of you to submit your ideas to data@finance.senate.gov, and I look forward to seeing your input. 

I’ve spent a lot of time talking to all of you about next steps and what data could mean for health care, but I’d be remiss if I didn’t mention that a lot has happened, thanks to CMS, in just three short years since Sen. Grassley and I first introduced our bill to open up the Medicare claims database:

In 2013, CMS made an unprecedented decision to release hospital billing data for the 100 most frequently billed hospital stays, accounting for 60 percent of all discharges that year.

Based on that single release, the nation learned the magnitude of the wide price variation across the country – the cost of joint replacement ranged from $5,300 at a hospital in Oklahoma to $223,000 at a hospital in California, just as one example. 

In 2014, CMS released hospital data again, showing how much prices can rise in a single year.  The New York Times reported – based on having access to that data – that prices for some procedures rose at four times the national inflation rate.

Finally in April, CMS released physician payment data, the next step in its strategy to improve Medicare’s data transparency.  This had a big impact in the policy community and mainstream media. For the first time, the public got a better picture of how physicians practice in the Medicare program.  Interest was so intense that in just one day, over 40,000 people downloaded the data and major publications like USA Today, the New York Times, and the Washington Post created user-friendly versions of the data. 

As CMS begins to link physician payment data with quality information, seniors and consumers alike will begin to have more complete information to guide their health care decisions.  We’re still a long way from that simple, easy-to-use website where people can easily compare doctors, hospitals and clinics for price and quality, but this is a move in the right direction.

The momentum toward greater health transparency needs to continue.  Medicare has a treasure trove of health care data that can and should be used to unlock the future of health care delivery.  By being a leader, and responsibly releasing this data, Medicare can set the gold standard for other payers to follow.  

Congress continues to be engaged in a big debate over health care, but today’s event highlights an area where people can find ways to work together.  Health care transparency and access to data, is one of those issues.  I look forward to working with my colleagues on the Senate Finance Committee to move the ball forward.

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