Fueling the Engine of Innovation by Unleashing the Power of Data
Administrator Seema Verma
Health Datapalooza
April 26, 2018
Washington, DC
Thank you Lisa for that kind introduction and for convening this meeting. I know that AcademyHealth has been a leader in promoting innovation and research in healthcare. So thank you all for joining us as we focus on Fueling the Engine of Innovation by Unleashing the Power of Data. Today, I am going to announce some exciting new data initiatives, but first I wanted to take some time to reflect on the importance of data to the entire health care delivery system.
On this day in 1954, the Salk polio field trials began just across the river in McLean, Virginia. A year later—based on millions of pieces of data collected in various countries—researchers announced that the vaccine was safe and effective. But it wasn’t theory or assumption that proved the vaccine’s success: It was paper data that was manually collected.
As science has evolved, so has our data, and its uses have transformed medical care. Today, we have more health data than ever. Think about it. EHRs are almost universally adopted—78% of doctors and 96% of hospitals now use them. We have data from wearable devices. Efforts focused on measuring provider quality are providing more significant data. And unlike in years past, it’s all in digital format. Now just think if the 1954 Polio research had been done using electronic data how much faster we could have made the vaccine available and helped people avoid the disease.
But today, having the data isn’t enough. Because if data is the fuel of innovation—then analytics function as the engine, turning the raw material into something useful.
We must have the technology to analyze and use the massive amounts of digital data that we have to make our healthcare system more efficient. Artificial Intelligence, machine learning, cloud computing, and big data analysis techniques are enabling us to understand the data, so that we may improve care, and drive value. Just this week I was at the MassChallenge Startup Accelerator in Boston and saw firsthand all the new innovations and new possibilities that are being fueled by the digital health era.
But current systems don’t enable easy access to all the data we need…all the data that researchers need, or that our healthcare system needs. We all know this, as we all still have to fill out the same forms at each doctor’s visit. And this problem—as I’ve shared with various audiences—became even more real to me last summer.
My husband and children were flying home to Indiana when my husband collapsed in the Philadelphia airport. In the hours it took me to get to my family, I tried to answer questions for the doctors about his medical history over the phone. Unfortunately, I had few answers. Eventually, due to the talent and tenacity of the medical team, they diagnosed him and saved his life.
When my husband was discharged, I asked for his medical records. The hospital eventually gave me a five-page discharge summary…and a CD-ROM. That’s right. After spending $30 billion on making our health data interoperable, I left with a CD-ROM, which was incidentally incomplete. When I finally found a way to review the CD-ROM, I realized it didn’t even have his MRI and other tests results. And all of the data that the hospital collected on their monitoring machines was also missing. A huge amount of health care information comes to us from devices: heart monitors, CT scans, and glucometers to name a few. We need for these devices to share data and be interoperable just as much as we need doctors’ notes and medication lists to be interoperable.
But this isn’t just my experience. This kind of thing happens to patients every day, all over the country. We simply haven’t empowered patients to fully use and control the most important information to each and every one of us: our health data.
And it’s not just about being able to get our records—but having all the data and being able to utilize and share them in the best way possible. Perhaps things would’ve been different if my husband could’ve authorized me to have his health records on my phone. Maybe we could have even predicted my husband’s cardiac arrest before it happened.
And just as important as controlling our health data, we should know how it’s being used at all times. As we’re all aware, the privacy and security of our data has recently become a universal concern, and necessary protections must be a priority, not overlooked, ignored, or disregarded.
That’s why we’re working on giving patients access to—and control of—their data across all of our programs…
…Why we’re working to enable researchers—with proper security and privacy regulations in place—as well as our partners at FDA and NIH, with access to our data…
…And why we’re working to ensure that we have the necessary data not just to improve individual health—but public and population health.
For me, one of the most rewarding aspects of being CMS Administrator is the opportunity to work to ensure that CMS beneficiaries have access to cutting-edge innovation, like precision medicine, new cancer treatments, robotic technology…or telemedicine. The Trump administration is working to make sure all of our programs are accessible and sustainable, and to fulfill the promise of high quality health care.
This is an enormous challenge. Because our system is not always delivering the value we should be getting for the money we’re spending. Let me explain. Our healthcare-spending rate continues to grow more quickly than the overall economy—and by 2026, we’ll be spending one in every five dollars on our care.
But despite the spending, many of our healthcare challenges continue to worsen. A recent study compared health metrics in the U.S. with ten other high-income nations. The study indicated that despite our utilization of health care being similar to other countries, our prices are higher. And while paying more than similar countries, the U.S. ranked the highest in both infant mortality…and in the percentage of adults that are obese or overweight.
The status quo simply is not sustainable. And President Trump agrees. Last year, the President issued an Executive Order titled “Promoting Healthcare Choice and Competition across the United States.” He made it very clear that he wants his administration working to foster competition in healthcare markets…and ensure that Americans receive better value for our investments in care.
As you heard from Secretary Azar, we’re working to accomplish this by using Medicare and Medicaid’s large footprint in the health care market to continue efforts to move away from a fee-for-service approach to a system that’s value based—one that rewards outcomes over volume.
You probably are thinking you’ve heard this all before. But what is different now is that we know we can’t achieve value-based care until we put the patient at the center of our healthcare system. And that requires that we empower patients with the data they need to become a consumer of healthcare and make informed decisions. Ultimately, the cornerstone of a patient centered system is data, quality data, cost data, a patient’s own data.
As this administration drives toward building a value based health care system, we understand the vital role that digital data will play. Let me tell you about what we’ve already done to increase, improve, and allow greater access to data; and how we are reshaping CMS’s vision for the future, one that also ensures data security and privacy.
First, as most of you know, over the years, CMS has released a considerable amount of data in a variety of formats – data that is important to the work of researchers, innovators, and thought leaders like yourselves. This includes hundreds of public use files that range from general statistics about our programs…to costs associated with specific services at specific hospitals.
These files do not—and never have—contained any patient data. But we’ve seen examples where they’ve supported the creation of tools to help consumers make better care decisions. They’ve also been used by health plans and hospital systems when designing networks to identify doctors that provide high quality care.
Last month at the HIMMS conference, I announced the new MyHealthEData Initiative. It’s a government wide initiative, spearheaded by Jared Kushner and Chris Liddell at the White House Office of American Innovation. It’s designed to help patients access and control their data, and share it with whomever they want – while knowing it’s transmitted to them or a party of their choosing in a secure and private manner.
Just this week we announced our plan to overhaul the meaningful use program. We are renaming the program “Promoting Interoperability,” to reflect the program’s new emphasis on providing healthcare information to patients in an electronic format and sharing information electronically among providers. To avoid a payment reduction, providers will still have to give patients electronic access to their health information further empowering consumers and ensuring that the data follows the patient. The proposed rule also increases privacy protections by requiring that all hospitals first protect the security of patient records.
We are also asking if providers should be required to share health data with patients as a condition of participation in Medicare. And we are not backing down on our requirement that providers use the most current version of Certified EHR Technology by 2019. This encourages systems to share information via APIs, so that patients can easily take their data to other providers.
You may have also heard about another action that we took for the Medicare population. Through Blue Button 2.0, we are providing the majority of beneficiaries with the ability to connect their claims data to third party applications, services, and research programs.
CMS Blue Button 2.0 is now in production and at last count there were over 200 innovation developers experimenting with the API. I encourage you to sign up for the Developer Sandbox to become part of this important step in modernizing the patient experience.
And these actions are not just taking place in Medicare. For the 70 million people on Medicaid, we have started working with states to make their claims data available to them as well.
I have also called on all insurers to do what we’ve done and give patients their claims data electronically. And I urged everyone in the healthcare industry to dismiss the idea that they can deny patients’ access to their health records.
Times have changed. Consumers’ demands have changed. And the expectations of CMS have changed. We must all accept the fact that patients can never again be kept in the dark when it comes to their healthcare information.
What we’ve undertaken at CMS are great steps—but they are steps to build on, not to rest on. And we know that there are problems with some of CMS’ data. It’s not widely used. It’s not easily accessible. It’s sometimes difficult to put into context. And it’s not fulfilling its potential to fuel innovation. But other than that, it’s great.
That’s why CMS is undertaking a new strategy that recognizes that we need better data that I want to discuss today for the very first time. I call it “Data Driven Patient Care.” This strategy is based on the understanding that data doesn’t mean anything unless it’s accessible and usable. And it helps us move toward value.
Our Data Driven Patient Care strategy will also help ensure that CMS can be an industry leader in unleashing the power of data to drive system transformation—enhancing efficiency, improving quality, and reducing cost.
The strategy is based on three cornerstones:
- Putting patients first
- Increasing the amount of available data
- And taking an API-first approach for sharing data.
I’d like to discuss with you some of the steps we’re taking to make our strategy a reality.
First, we're very excited about expanding the data we make available to researchers in our Virtual Research Data Center.
As you’re probably aware, CMS has a large amount of data on our current 130 million beneficiaries and our previous enrollees. The VRDC provides timely access to CMS program data—including Medicare fee-for-service claims data—in an efficient, secure, and cost effective manner. If you’ve seen a study that references Medicare data, it probably came from an analysis of data in the VRDC.
Researchers have direct access to approved privacy-protected data files, and they’re able to conduct their analyses within a CMS environment that is safe and secure.
Today, I’m extremely pleased to announce that, for the very first time, we’ll be releasing Medicare Advantage data to researchers.
We recognize that the MA data is not perfect, but we have determined that the quality of the available MA data is adequate enough to support research. And although this is our first release, going forward, we plan to make this data available annually. And we’re not stopping with MA data. Next year, we expect to make Medicaid and Children’s Health Insurance Program data available. This means researchers will have access to data on another 70 million patients, which represent a different population with different needs than Medicare beneficiaries.
Medicaid provides health coverage to millions of Americans including people with disabilities, pregnant women, children and low-income adults who often experience multiple health issues and face challenges managing their care. Data has the potential to help produce better, more targeted treatments for these patients, improving their quality of life while at the same time reducing costs. Our hope is that this data will be used for critical research on this vulnerable population. It will also help provide information for our first-ever Medicaid Scorecard that we will be releasing this year.
We are also taking an API-first approach to modernize how we share data with our partners. We’re working to ensure that our quality and cost data is available in a timely—and secure—fashion, and, eventually, if a patient wants the information, they’ll have it at their fingertips.
Of course, we recognize that across all of our efforts, we have to look at privacy at the front end and ensure informed consent. Patients must always be aware of how their data is being used and shared. Americans demand this of us. In response, we’ll be strengthening controls around access to all data.
CMS wants to partner with you to foster innovation and competition to ensure a value-based healthcare system. We can’t unlock the power of data without your collaboration. Tell us what pieces may be missing, and let us know what still needs to be done. That’s my call to action to each of you.
Who knows what knowledge—what treatments and cures— are hidden in the reams of CMS data. Help us use it securely. After all, this is knowledge that could change the life of a patient—or the trajectory of a health care system. And we will all be the better for it.
I hope that you will visit the CMS workshop tomorrow morning, and that you will follow us on Twitter @SeemaCMS to follow all of the things we are doing. I wish you a successful conference, and I am excited about what is possible in healthcare when innovation is unleashed.