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Remarks to Datapalooza

Alex M. Azar II
February 11, 2020
Washington, D.C.

We are determined that this administration will be looked back on not just as a turning point for health IT, but also for the much broader mission of putting patients at the center of American healthcare.

As Prepared for Delivery

Good morning, everyone, and thank you for having me here today.

Before I begin my remarks on the topic of health IT and data, I want to provide an update on the China coronavirus and talk a bit about the extensive, decisive actions that President Trump and his administration have taken to keep Americans safe.

First, our sympathies go out to the people in the United States, in China, and elsewhere who have been sickened by the virus or seen loved ones fall ill.

We were saddened to hear recently of the first death of an American citizen, a 60-year-old woman in Wuhan.

Our gratitude goes out to those responding to the outbreak in China and around the world.

We are working as quickly as possible on the many unanswered questions about the virus: exactly how rapidly it spreads, how deadly it is, whether it is commonly transmitted by patients who are not yet displaying symptoms, and other issues.

There have now been 13 cases of the China coronavirus confirmed in the United States, including two cases of transmission to people who had not recently been to China.

Right now, our scientists and public health experts are trying to learn more about the virus, using the data we have from China and the cases we have here.

In the very near future, we hope, our experts will be able to work with their Chinese counterparts and other international experts on the ground in China.

The virus is a potentially very serious public health threat.

We expect to continue seeing more cases here, in China, and elsewhere. The immediate risk to the American public at this time is low, and we are acting swiftly to keep that risk low.

But, I want to emphasize, the situation has the potential to change very quickly, and we are constantly preparing mitigation strategies that would be necessary if the situation does change.

I’ll mention just a few of the ongoing administration-wide actions we’ve taken.

The State Department, HHS, and other agencies have been working to help Americans return to the United States from Wuhan if they so desire.

The Department of Homeland Security and the Department of Transportation are working hard, in conjunction with the CDC, to screen passengers arriving in the United States who have recently been in China and could potentially represent a risk of spread.

Our longstanding offer to send our world-class experts to China to assist with their response remains on the table.

Last week, the State Department helped deliver 17.8 tons of relief supplies to Hubei, the epicenter of the outbreak.

Meanwhile, we are working on the ground in countries around the world—in Africa, Asia, and elsewhere—to assist with detection and prevention.

This work is done by CDC field offices, State Department personnel at embassies, and other personnel who have built partnerships with other governments through years of investment in preparedness.

Here at home, state and local public health departments are working with the CDC to follow the playbook for an infectious disease response: identify, diagnose, isolate, treat, contact trace.

We’re working with these local authorities and the private sector to elevate our preparedness efforts, so that we can begin to mitigate the spread of the virus if it reaches our shores in larger numbers.

Last week, the FDA issued an emergency use authorization for the diagnostic test that was so rapidly developed by the CDC.

These test kits are now available for order by U.S. state and local public health laboratories, Department of Defense laboratories, and select international laboratories—all told, 115 U.S. labs and 191 international labs.

Our Biomedical Advanced Research and Development Authority, or BARDA, has been expanding its work with a pharmaceutical company around a candidate therapeutic for the China coronavirus.

Research on countermeasures is also ongoing at NIH, which is working on a potential vaccine, in conjunction with the private sector.

The FDA is actively working to accelerate the development and availability of such countermeasures and to assess the risks that the outbreak could present to American medical supply chains that involve China.

This comprehensive response reflects the strength of the American healthcare system, our public health infrastructure, and our biomedical research enterprise, which are each the finest in the world.

In part, we have built such high quality systems because they’ve always been a collaboration between the government and the private sector.

That same collaborative spirit is represented in much of the work being showcased at Datapalooza today.

I’m pleased to be here for the first iteration of Datapalooza that’s co-hosted with the National Health Policy Conference.

The connection between these two conferences reflects what we all know well: Health policy and technology policy are not two separate conversations, but two sides of the same coin.

All of you know that health IT policy is health policy, tech policy is health policy, and data policy is health policy. The Trump administration is right there with you on this.

Health IT, digital health, and greater utilization of data are absolutely key to this administration’s healthcare agenda.

We are determined that this administration will be looked back on not just as a turning point for health IT, but also for the much broader mission of putting patients at the center of American healthcare.

President Trump has an exciting vision for healthcare: a system with affordable, personalized care, a system that puts you in control, provides peace of mind, and treats you like a human being, not a number.

Delivering on this vision requires having a healthy respect for what works about our system—and a vigorous dedication to making it better.

That’s what the President has promised Americans: Protect what works, and make it better.

So, what does that mean when it comes to health IT, data, and technology? One thing that has worked, in fits and starts, is the digitization of health records.

It has created the potential for a whole ecosystem of applications and innovations that can put the patient at the center and empower providers with the right information.

In the days since I was sitting around Secretary Leavitt’s conference room table talking about these topics, as HHS’s general counsel, we’ve seen massive advances in the technology at our disposal.

The ubiquity of smartphones, apps, cloud-based storage and computing power, and near-universal access to high-speed internet has completely changed so many aspects of American life, but not, unfortunately, much of healthcare.

These technological advances have made the promise of digital health even more tantalizing: It could put patients and providers truly in control, enabling personalized treatment of every patient.

But in order for this to happen, we need not just digitized records, but records that are transportable and interoperable—that can be easily accessed and used in different forms.

Such records will be more than just records—they will be highly valuable tools in delivering Americans better, more affordable healthcare.

This isn’t just a conceptual challenge.

It can also be a source of tremendous frustration for patients themselves—no matter how well-versed these patients may be in health policy.

It’s even been a source of frustration for me, as a patient—quite recently, in fact.

Earlier this year, I spent hours trying unsuccessfully to get access to my health records and, to this date, still haven’t had my call returned to help me get into them.

And I’m the Secretary of Health and Human Services!

That was the one reassuring thing about the experience: There was no preferential treatment, just equal opportunity frustration.

That isn’t even the only time I’ve encountered issues around my health records.

Last year, I had to visit three different providers that were all part of the same large system: a primary care practice, an imaging provider, and an inpatient hospital.

Yet each of them had a separate system—within this one business, they didn’t even have interoperability!

This isn’t just frustrating. Each of these issues is an opportunity for medical error.

At one point, I saw that the hospital planned to switch me from one statin to a much more powerful one, and I told them I didn’t want to do that. But sure enough, somehow that information wasn’t incorporated into my record and, that night, I got a cup of pills with the drug I’d said I didn’t consent to taking.

Health records today are stored in a segmented, balkanized system, and it’s not just affecting the patient and provider experience—it’s affecting care.

This has to change, and it has to change soon.

That is why, last year, we proposed ONC and CMS’s bold interoperability rules, which will finally put patients in charge of their data.

The details of the rules may be complex, but the goal is very simple: It’s about access and choice.

Patients should be able to access their electronic medical record at no cost, period.

Providers should be able to use the IT tools that allow them to provide the best care for patients, without excessive costs or technical barriers. 

This sounds like a pretty intuitive, appealing standard.

Unfortunately, defenders of the balkanized, outdated status quo have fought our proposals fiercely.

I want to be quite clear: Patients need and deserve control over their records, and interoperability is the single biggest step we can take toward that goal.

This is not about one software system design or the other.

This is about ensuring that patients have access to information about their own health, and that providers have a choice of tools and solutions to provide the best possible care. 

Look at the status quo: Patients cannot easily access their medical records, providers on different systems cannot effectively communicate, and those holding patient data have prevented new market entrants from participating in this space.

Defending a system like this, defending that status quo, is a pretty unpopular place to be.

Far too many Americans have had experiences just as frustrating as I’ve had. In fact, I’ve heard stories just like mine from Dr. Rucker at ONC and from Administrator Verma at CMS. At this point, we could practically turn HHS senior staff meetings into a roundtable about frustrating health IT experiences.

That means we have a serious problem—and that scare tactics are not going to stop the reforms we need.

Our efforts around interoperability and health IT go beyond control of clinical records. Putting patients in charge of their health records is a key piece of patient control in healthcare, and patient control is at the center of our efforts to build a value-based healthcare system.

Seamless health IT systems, and patient use of smartphone apps, hold huge potential for delivering affordability and quality through price transparency and competition.

Starting in January 2021, hospitals will be required to make available their actual prices and the prices they’re willing to accept from patients paying cash.

We’ve also proposed to require that insurers make public the prices that they negotiate with providers, and what patients’ cost-sharing will be on a given plan.

Now, imagine having that data be seamlessly integrated with patients’ clinical information—so you can be aware of what services you’re receiving and how much you’re paying for them, in the same place.

That is quite possible with the right work on harmonization of data standards.

This could not only transform the experience of shopping for care, but also the experience of receiving care. We know patients and providers are often frustrated by the process of prior authorization, but we could greatly accelerate that if clinical and financial data streams were integrated.

And health records and cost aren’t the only key pieces of information for patients.

Quality information is essential too. That is why the President’s transparency executive order asked HHS to work with the Department of Defense and the Department of Veterans Affairs to develop a roadmap of all the health quality measures that we collect.

In order to have a true market in healthcare, we need transparency for consumers on both what you’re paying—the price—and what you’re getting—the quality.

The thousands of quality measures administered by HHS, the VA, and DOD are quite important to patients, providers, and researchers.

They help HHS perform a vital function of government: protecting the health of the American people and promoting quality care.

But we have gone too long without examining what we, as a government, are doing in this space.

We need to ask whether we’re using the right metrics, whether the process for picking these metrics is appropriate, and how we can make these metrics more meaningful and useful for patients.

We’re determined to ensure that our quality data doesn’t just sit in a silo somewhere. It needs to be put in the hands of patients, providers, and researchers.

That attitude applies to our internal practices at HHS, too.

This past fall, we launched a new data initiative as part of ReImagine HHS, our effort to improve management across the department.

The goal of this program, currently called the Data Insights Initiative, is to make much of HHS’s incredible data resources all accessible in one place.

Under the initiative, HHS staff will have access to a kind of one-stop shop where they can access and analyze the Department’s unparalleled data assets faster, easier, and more securely.

I’ll give you just one example of a problem that this initiative is going to help solve.

The strategic lead for HHS’s response to the opioid crisis is Admiral Brett Giroir, our Assistant Secretary for Health.

Since I appointed Admiral Giroir to this role, he has worked tirelessly to ensure that our response is based on the best and most recent data.

The data we need, like overdose deaths, emergency department visits, and the number of providers offering medication-assisted treatment, eventually makes its way to where it needs to go at HHS.

But it comes from a huge and diverse number of sources, such as state and local health departments and other federal agencies.

With this initiative, all of that data will be accessible to our strategic planners in one place, and data sets will be easily analyzed and visualized, no matter where they come from.

We always want our decisions to be based on the best and latest data, and the initiative I’ve described will make doing so much easier.

Whether you work at HHS or not, I encourage you to follow the results of this initiative.

In time, we believe it can be a test case for even more ambitious ways to use data and work with partners outside the walls of HHS.

I want to close by noting that the role I’ve laid out today around data and technology is a redefinition of the role of government in healthcare: government not as a heavy-handed intervener, but as an enabler and catalyst of private sector innovation and competition.

This can deliver a completely different kind of healthcare system: where you, as the patient, are at the center and in control, with seamless access to the data you need to make decisions with your healthcare provider.

That is the kind of personalized system that President Trump has promised the American people—and it will be a more affordable, higher quality system, too.

Such a system isn’t the stuff of science fiction. As you all know, we certainly have the technology to make it happen. We’re working to make it a reality every day at HHS, and I know many of you are hard at work on the same goal.

So thank you again for being here today, and I look forward to working with all of you in the years to come.

Content created by Speechwriting and Editorial Division 
Content last reviewed on February 13, 2020