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Datapalooza V

HHS Secretary Kathleen Sebelius

Washington, D.C.
June 3, 2014

Thank you, Bryan.  Bryan Sivak and his team are doing a phenomenal job.  Because of their work, we can finally say that the “information oligarchy” that plagues so many large organizations is a thing of the past at the Department of Health & Human Services.  Instead, we’ve grown into an “open data democracy.” 

I also want to thank everyone with the Health Data Consortium.

I understand that yesterday you heard from the Right Honorable Jeremy Hunt, who is the Secretary of State for Health in the United Kingdom and a real visionary when it comes to big data.

I’m delighted to have the opportunity to join you this afternoon.  This is my fifth Datapalooza.  And I hope that I’ll be invited back to Datapalooza 10 and again to the 15th annual meeting.  I say that, because I firmly believe this gathering will take place for many, many years to come.  

One of the best things to do at Datapalooza is simply to look around the room and see how many people are here.  You know, back in 2010 we started with a crowd of only about 45.  Today, we have a couple thousand.

So in a way, Datapalooza is the quintessential American start-up success story.  We started small, around a big idea – and we continue to grow. 

Now, some palooza-rookies may be asking, “So what’s the big idea?”

The idea is that if we in government are willing and able to remove the barriers to innovation, then people will innovate:

You’ll develop apps, and exchange ideas. 

You’ll help us learn more about some of our greatest public health challenges. 

You’ll start businesses.

And you’ll empower more Americans to take control over their own health.

Vincent Van Gogh once said that “great things are done by a series of small things brought together.”

We hope you’ll consider this conference to be your canvas.  We’re open-sourcing and crowd-sourcing information to give you the paint and the brushes.  What we’re asking of you is to provide the imagination. 

From Lazy to Active Data

You’ve already heard some exciting presentations over these past couple days.  I wanted to take this opportunity to give you a little context.

When President Obama put his hand on the Bible and took his oath of office in January 2009, as a country we were in the midst of some pretty amazing technological breakthroughs: particularly when it came to research on new vaccines, cures, and therapies.

And yet, a decade into the 21st century, our federal government was still operating under a 20th century mentality when it came to technology, innovation, and the free flow of information. 

And to be fair, many in the private and nonprofit sectors were operating under the 20th century models, as well. 

If you took, for example, Electronic Health Records, only about 1 in 8 hospitals were using them – even though this technology existed.  

So even as Americans were sending hundreds of millions of tweets,  and scientists were achieving breakthroughs in fields like molecular medicine, doctors were still collecting and storing the most basic information about their patients the same way they did when Sputnik was launched:

With clipboards, manila envelopes, and paper files.

Now, as I’m sure you’ll recall, one of the things that President Obama inherited from his predecessor, was the worst economic recession in a generation.  Americans were losing their homes, their jobs, and also their health insurance.  Businesses were closing their doors.  And as a consequence, banks stopped lending.

In the health care space, the entrepreneurship gap we had already been experiencing became even more pronounced.   This sector was creating new technologies, treatments, and therapies – but not enough new businesses. 

But thanks to people like you, all that is changing. 

In the spring of 2009, President Obama asked me to serve at the helm of what is today, a trillion dollar, 90,000-employee enterprise known as the Department of Health and Human Services.

Under his direction, one of my immediate goals for the Department was to liberate the information and data that could be useful to innovative Americans – both in and out of government. 

We believed that if we succeeded in bringing our Department – technologically speaking – into the 21st century – that we’d empower entrepreneurs to create new tools and applications.

And furthermore, we’d help policymakers implement data-driven strategies. 

We’d allow researchers to better understand our public health challenges. 

We’d empower doctors to make more-informed decisions.

And for the first time for many, we’d empower consumers to have their own health information and help to navigate their own patient care.

As we began the process of modernizing our Department, two things became very apparent:

First, we came to realize just how much information our Department was collecting. 

When I meet folks around our country, I find that they’re often surprised by just how much ground our Department covers – including Medicare & Medicaid, Head Start, the Indian Health Service, the Surgeon General’s Office, the FDA, NIH, CDC, and others. 

All of these enterprises collect a lot of information: everything from public health data about the prevalence of disease, to Medicare data about health care spending and provider activity, to data about ongoing clinical trials, and much, much more

So this was the first thing that became very apparent to us.  The second thing was that for all the information we were collecting – we weren’t really putting it to good use.

Most of the information we were collecting as a Department was so-called “lazy data.”  Although this information could be valuable to patients and their doctors – and for that matter to scientists, researchers, programmers, engineers, entrepreneurs and policy makers – little of it was actually getting to them.

Instead, this information was being locked away and walled off.  Much of it was difficult or impossible to access.  It was scattered across hundreds of websites or publications.  It was published in formats that were hard to use.  Sometimes it was hidden behind pay walls.  In most cases, it was unknown to the public.

Now, this wasn’t unique to HHS.  It was how things had tended to be done, across governments at every level, big nonprofit organizations, and even in many private sector companies.

Sometimes, information was purposely held back because leaders didn’t trust the public with it.  Other times, it was simply a matter of disorganization or the legacy of information that once existed only on paper, finally getting digitized. 

Either way, anyone who has ever managed a large enterprise will tell you about a phrase they hear time and again: “That’s the way we’ve always done it.”

Well, as the inventor Charles Kettering said, "If you have always done it that way, it is probably wrong."

So from day one, we planted our flag in the ground and committed ourselves to liberating our Department’s flow of information. 

Our goal then – and our goal today – is to convert our “lazy data” into “active data” – to push it into the public domain for the common good.

So we began taking the vast stores of data our Department already has, and making it available to the public. 

And it’s important to note that as we made this data available, we very diligently stripped out all the personal information.  Privacy concerns have always been – and will always be – priority number one. 

To date, we’ve already released more than a thousand data sets.

In fact, just yesterday we announced that for the 2nd year in a row, we will be releasing data – with privacy protections – on what hospitals are charging Medicare for the services they deliver to beneficiaries.

Yesterday, we also announced an initiative called openFDA.  Among other things, it will finally make adverse event data available in formats that developers like you can actually use.

So this work continues.

Sparking Entrepreneurship

As we release data to the public, we’re finding that Americans are using it to innovate. 

And as Bryan Sivak said yesterday, we’ve seen more health care start-ups emerge in the past five years than we had seen in the previous 20.

A few years ago, a man named Russ Graney was helping his uncle find post-acute care.  Russ and his family made 17 calls, sent five faxes, and ultimately had to keep Russ’s uncle in the hospital for three extra days. 

All this inspired Russ to join with his friend Mike Galbo, and develop an application that would help other families avoid having to go through the same frustration. 

Together they founded a company called Aidin.  Using open-sourced CMS data their app empowers patients and their families to find the best follow-up care at facilities like nursing homes. 

Russ and Mike have found that when you present patients with quality data about their post-acute care options, about 8 in 10 of them will choose a high-performing provider.

That’s not only good for patients like Russ’s uncle.  It has a significant impact on readmissions.  It allows the social workers in our hospitals to operate more efficiently. And systemically, it allows us to drive down costs. 

We’re also seeing innovation on the human services side of the equation. 

Some of you may have heard the presentation yesterday about Purple Binder, which uses human services data.  One of the interesting things about its two founders, Joe Flesh and Declan Frye is that neither had a background in human services policy or health care.  So no matter what brought you here today, we’re glad to have you.

Putting Information in Patients Hands

The common thread tying together the stories of Russ and Mike, and Joe and Declan, is that both their apps put information directly into the hands of everyday Americans.

And that’s been a common theme of our work, as we’ve sought to transition our Department into the 21st century.

One of my favorite examples is that of the “Hospital Compare” tool we’ve made available for all on Medicare.gov. 

All you need to do is punch in your zip code and you get a list of hospitals in your area.  Click on up to three, and you can compare them by categories such as “surveys of patient’s experiences,” and whether or not they have medical imaging capabilities.  With a few clicks you see things like the average time patients spent in the emergency department, before they were admitted to the hospital as an inpatient, or 30-day readmission rates.

In another example, we’ve been working to put more accurate information into the hands of patients and their doctors by expanding the use of Electronic Health Records.  Through the Recovery Act, President Obama created incentives to help providers transition from paper to digital files.  And by 2012 we had tripled the numbers of hospitals making use of them.

We’re also currently in the process of increasing Public Access to the results of scientific research that’s funded by NIH, CDC, FDA, and AHRQ -- and this can have an amazing impact:

Some of you may be familiar with the story of Jack Andraka.  Jack was First Lady Michelle Obama’s guest at last year’s State of the Union.  He created a groundbreaking paper sensor that detects certain cancers in only five minutes.  And he did it at the ripe old age of 15: That’s fifteen – one five. 

One of the reasons Jack was able to make this discovery is that the NIH now provides free access to research journal articles available as part of its Public Access policies.

Now, while Jack’s story is fairly unique – the basic concept here is universal: Good things happen when we put information into people’s hands… Whether it’s a journal article, text messages to encourage a young person to quit smoking, or a Facebook post with information on how to sign up for affordable health coverage through the Health Insurance Marketplace.

Before I close, I wanted to share one more example with you about the value of data to public health – because it’s timely today:

In 2011, we collaborated with the EPA to provide our local partners with data on both air quality and asthma hospitalizations.  A local health official can now look at an overlay of these datasets, and make data-driven decisions on how to target their resources.

Now, those of you who are Palooza veterans may recall the story of one of our past participants, David Van Sickle.  He figured out that that if you put a GPS device on an Asthma inhaler, that patients and their doctors can better track and manage their Asthma.  David founded a company that was originally called Asthmapolis, and is now called Propeller Health.

I bring these examples up, because just yesterday, EPA announced its clean power plan, which is projected to prevent as many as 150,000 asthma attacks among America’s children.

So, all these things are connected. 

Conclusion

Abraham Lincoln is reported to have said once that although he walked slowly, he never walked backward. 

Many of these reforms were many, many years in the making – in some cases, generations.  But we shouldn’t mistake a lack of speed for a lack of stability.

I want to make it very clear that these reforms are here to stay.  President Obama is committed to them.   The team at HHS – including the incoming Secretary – are committed to them, as well. 

The flow of information is not like water coming out of a faucet.  Once you open it, it’s incredibly difficult to close back up again. 

Ultimately, all of these reforms are bigger than one person, or even one Administration.  They represent a march of progress that can only go in one direction – and that direction is forward. 

Whatever brought you here today, you have a tremendous opportunity before you.  The apps you develop can literally change the face of humanity.  They can help us tackle some of our greatest public health challenges.  And they just might allow us to solve some of our economic challenges as well. 

You have a unique opportunity to work at the intersection of information, innovation, and imagination. 

The brushes are in your hands.  The paint is mixed and ready to go.   The rest is up to you. 

Thank you all very much.


Content created by Assist. Sec./Public Affairs - Digital Communications Division
Content last reviewed on June 13, 2014