By SEEMA VERMA

Following is the full text of CMS administrator Seema Verma’s remarks at HIMSS18 in Las Vegas.

It is a privilege to be with you here today and speak about the amazing advancements happening all across the nation in healthcare. One of the most exciting parts about being the CMS Administrator is the opportunity to see the cutting-edge breakthroughs that are happening every day. As we walk the exhibit hall of this conference, it is easy to be struck by how innovation is accelerating in healthcare.

We have procedures that we couldn’t have imagined a generation ago that are saving thousands of lives.

• Precision medicine has opened the door to a new world of therapies specifically tailored to a patient’s unique genetic code.
• We can now treat retinal disease that causes blindness.
• Robotic technology is making surgeries less invasive, and we are on the verge of having the world’s first artificial pancreas.
• 3D training tools are enabling doctors to learn anatomy without a cadaver.
• Telemedicine is also improving access to care and empowering CMS beneficiaries to lead healthier lives.

And it doesn’t stop with traditional healthcare innovators. The automobile industry is partnering with leading technology companies to perfect driverless cars that may one day give independence to our nation’s elderly and people with disabilities. And through smart phones and wear-able technology, we are compiling health information every second, and Americans are using that information to track activity, calories, and heart rates. Innovators are even developing ways to monitor chronic illness with electronic watches. The list of innovation is endless.

But while all of this technology is changing every area of our lives, we face enormous challenges in healthcare, and the value that we are receiving for the amount of money that is being spent.

Last year CMS released a report showing that the rate of growth in healthcare spending is not slowing down. Despite all of the changes and regulations over the past decade, healthcare continues to grow more quickly than the overall economy. By 2026, we will be spending one in every five dollars on healthcare.

This matters to each and every one of us because this increase in spending will continue to crowd out funding for other priorities, such as roads and schools, as well as national defense. Not to mention it means higher healthcare spending for each and every one of us. We’ve already seen our costs go up, with health insurance premiums, co-pays, and deductibles.

And yet, this national increase in spending has not addressed many of America’s healthcare challenges. Entire communities have been ravaged by the opioid epidemic, and we rank poorly compared to other countries when it comes to preventing premature births, infant mortality and chronic diseases. It’s clear that when it comes to the most consequential measures of health and wellness, we need to get much more for our money.

The system we have is unsustainable, and it cannot continue. And President Trump agrees.

Last year, the President announced an Executive Order: Promoting Healthcare Choice and Competition Across the United States. Through his executive order the President made clear that he wants his administration working to change the rate of growth of healthcare spending so that competition can be fostered in healthcare markets, so that patients, and the American people, may receive better value for our investment in healthcare.

Secretary Azar and I are working for competition and better value by moving away from a fee-for-service approach, to a system that is value-based – and that rewards value over volume. This means paying providers on the outcomes they achieve, making people healthier rather than how many procedures they perform. Now many of you have heard this all before.

But, I’ve always been struck by how seldom the patient is mentioned in discussions around value-based care. Let me be clear, we will not achieve value-based care until we put the patient at the center of our healthcare system. Until patients can make their own decisions based on quality and value health care costs will continue to grow at an unsustainable rate. This administration is dedicated to putting patients first, to be empowered consumers of health care that have the information they need to be engaged and active decision-makers in their care. Through this empowerment, there will be a competitive advantage for providers that deliver coordinated, quality care, at the best value, to attract patients who are shopping for value.

I have spent a lot of time talking to Americans from all walks of life, and they are demanding more accountability from the health care system. As they are paying more through higher premiums and higher deductibles, they want to know how much services are going to cost, and they want to shop around for the best price. They don’t want to be paying for duplicate tests, or unnecessary care, and they are demanding a higher level of service and efficiency from the healthcare system.

In every other area of our lives, we are receiving better services that leverage innovation in technology. We can take our ATM card to any bank across the globe, and that bank can access our accounts. We can track every credit card purchase, and every phone carrier honors our cell phone number, and we receive ads for products we were only thinking about buying – or so it may seem.

So it should be no surprise that Americans have the same consumer friendly demands for healthcare. Americans are demanding that when they go to the doctor, the doctor spends more time with them, and less time on paperwork or typing into a computer.

To that end, in our drive towards value-based care, CMS adopted an approach that we call “Patients Over Paperwork.” Patients Over Paperwork is a direct result of President Trump’s Cut the Red Tape initiative, which aims to restore patients as the priority of everything we do, and eliminate burdensome regulations that have outlived their purpose.

We have held meetings in cities across America, and received thousands of letters. And one of the most common complaints we have heard from both patients and providers has been the inefficiency of Electronic Health Records – or EHRs, and the inability of providers to effectively coordinate care for their patients.

Now tremendous progress has been made in the adoption of EHRs. The technology for data sharing has advanced, and data is often shared effectively within a given healthcare system, with inpatient and outpatient doctors in the same provider system able to share and edit the same clinical record.

Despite this progress, it is extremely rare for different provider systems to be able to share data. In most cases there is not yet a business case for doing that – it’s in the financial interest of the provider systems to hold on to the data for their patients.

When providers don’t have timely patient information readily available, tests are repeated, and we are paying for unnecessary treatments. All of this drives up costs and puts patient safety and quality of care at risk.

Providers also continue to find it difficult and burdensome to use EHRs. They talk about how they are still using faxes to send and receive patient data. That’s right – fax machines! In the era of artificial intelligence, machine learning and precision medicine, fax machines continue to be the go to technology for providers transmitting health information.

One top of that, EHRs still don’t do the necessary job of making patient records easily available to providers and patients. EHRs were originally designed as a tool to help with billing, and they are falling short in their ability to provide data in a portable and accessible format. Now some of this is due to CMS. Our regulations are outdated, and they were created for a paper-based system.

So in many ways, EHRs have merely replaced paper silos with electronic ones, while providers, and the patients they serve, still have difficulty obtaining health records. For the fortunate few who do ultimately obtain their records, the information is often incomplete, and not always digital or understandable. You might be able to get some information in your provider’s portal but if you are seeing different providers, you might be checking a bunch of portals. You have all been there before, and so have I.

This problem became even more real to me last summer. My family had just taken a weekend trip, and I was on my way back to DC while my husband and kids were heading back to Indianapolis. While they were waiting for their connecting flight, my daughter called to tell me that my husband had collapsed in the airport and that he wasn’t breathing.

If it weren’t for the bystanders, and the first responders at the airport, my kids would’ve watched their father die. In the hours it took to get to my family, I tried to answer questions for the doctors over the phone about his medical history, but unfortunately I had few answers. So I desperately made calls to his doctors back home in Indiana asking if there was any information they had that could help save his life.

And when I arrived at the hospital, the doctors and nurses still didn’t know what was wrong with him, or how to treat him. He had a multitude of tests… MRIs, CAT scans, blood tests, ultrasounds. You name it, he got it. Eventually after all of that and due to the brilliance of the medical team at the University of Pennsylvania, they diagnosed him, treated him and saved his life and we are grateful to them.

We spent almost a week at the hospital and so when my husband was discharged, I asked the hospital for his medical records so I could make sure that his Indiana doctors had all of the information they would need. The doctors looked a little uncomfortable, and they said they would get back to me. After some time, they returned and handed me five sheets of paper, which was essentially just the discharge summary, and a CD-ROM.

I’m going to let that set in for a second. After the federal government has spent more than $30 billion on EHRs . . . I left with paper and a CD-ROM ..

Most computers don’t even take CD-ROMS anymore. At a time when we are sending Teslas to Mars, patients are receiving health records in forms that are completely outdated. When I finally found a way to review the CD-ROM, I realized I didn’t even have the results of the MRI and some of the other tests. I couldn’t help but contemplate the disconnect between the genius of the medical system that used the latest technology and science to save my husband’s life but didn’t have the tools available to just give me his medical records, which I thought would have been the simplest task out of all they had performed.

This isn’t just my experience, this is happening to patients every day, all over the country. I’ve heard stories of patients having to pay for their records, or wait days to receive x-rays and charts. It is all too common for patients to have to drive to separate locations in order to gather their records.

Just last week I spoke with a doctor who had twins. It took him – a doctor – six months to get his children’s health records.

After hearing dozens of stories, reading thousands of letters, and experiencing the difficulty that comes from the lack of interoperability, it is important to me to speak for all patients. It’s our data. It’s our personal health information, and we should control it.

I wondered if you would do me the favor of looking down at your phones or – for many of you – keep looking down at your phones. I’d be willing to bet that every one of you have apps that enable you to access various types of information that is important to your lives. Yet, we haven’t been able to empower patients with the control of the most important information to each and every one of us – our health data.  Instead, we have been saddled with a fragmented system that puts our systems first and patients second.  Case in point, if I asked you how many gold medals the U.S. team won at the Olympics, you could have the answer in less than 30 seconds. But if I asked you how many months it has been since your last physical, or what your last LDL cholesterol number was . . . not so much. You don’t know, because that information is just not easily accessible.

At a time when healthcare data is being generated from so many sources, too often that data runs into the hard walls of closed systems that hold patients, and their information, hostage.  Our doctors run scans and other tests on us, but the results often sit dormant in distant databases where sometimes we can’t even access the records without overcoming multiple barriers. We are told this lack of access is for our own security. Nod your heads if you’ve been in this situation.

So let’s be clear. We cannot effectively transition to a value-based system unless we provide to both the doctor and the patient all of the clinical and payment data required at the point of care, to help them mutually make a different and better decision than they could have today.

To this end, the administration is launching the MyHealthEData Initiative. MyHealthEData is a government-wide initiative that will break down the barriers that contribute to preventing patients from being able to access and control their medical records. MyHealthEData makes it clear that patients should have access and control to share their data with whomever they want, making the patient the center of our health care system. Patients need to be able to control their information and know that it’s secure and private. Having access to their medical information will help them make decisions about their care, and have a better understanding of their health.

MyHealthEData will unleash data to trigger innovation, and advance research to cure diseases and provide more evidence-based treatment guidelines that ultimately will drive down costs and improve health outcomes.

Steve Jobs shared his vision of empowering people with technology when he declared,

“Technology is nothing. What’s important is that you have faith in people, and if you give them the tools, they’ll do wonderful things with them.”

Steve reimagined the smart phone as a platform for exponential innovation. He created an environment that allowed millions of app developers to do wonderful things for consumers around the world. Indeed, a whole “app economy.”

We have been working hard at CMS to create an environment where innovators can do wonderful things. 

Stories like mine are even more frustrating considering the truly awe-inspiring innovations that are possible.

Imagine a world in which your health data follows you wherever you go and you can share it with your doctor, all at the push of a button. Imagine if, in turn, your doctor didn’t have to spend so much time faxing records and staring at a computer during an appointment. Imagine if you could track your medical history from your birth throughout your life, aggregating information from each health visit, your claims data, and the health information created every second through wearable technology.

Imagine if our health records weren’t just used by our doctors in their workflow, but rather if EHRs allowed third-party applications to access and leverage that data in innovative ways for both the patient and doctor. Imagine if patients could authorize access to their records to researchers from all over the country who could not only develop specific treatments for their needs, but the researchers could also use that information to develop cures that could save millions of lives, like what NIH and the Office of the National Coordinator – or ONC, are doing with their Sync for Science program.

The reality is that once information is freely flowing from the patient to the provider, the advances in coordinated, value-based and patient-centric care will be even greater than anything we can imagine today. As Steve Jobs said, give them tools and they will do wonderful things with them.

Things could’ve been different for my family if my husband could have authorized me to have his health records on my phone. I imagine some innovator, maybe one of you in this room, would’ve come up with a way for me to be immediately notified that he was in distress so I could instantly transfer his records to the first responders. And better yet, maybe we could’ve predicted his cardiac arrest days before if his electronic watch had been compiling health information about his activities, his heart rate, and breathing, and other data, matching that information with what we know from thousands of similar patients from all across the country, and sending that data to alert his doctor, and possibly preventing what happened.

My husband was part of the 1% that survives his condition. We shouldn’t have to depend on happenstance for our loved ones’ survival, not when anyone can have a video conversation with family and friends across the world at a tap of a screen.

Through the MyHealthEData initiative, this administration is focused on putting patients first, truly first, by empowering them to make cost and quality decisions, and giving them the information they need to prevent disease and improve their health.

This administration will pull every lever to create a healthcare information ecosystem that allows and encourages the healthcare market to tailor products and services to compete for patients. This will help increase quality, decrease costs, and promote healthier lives. And the healthier our citizens are, the lower our costs will be. Our administration is completely aligned towards achieving this goal, and the time is now.

Seventy-eight percent of doctors and 96% of hospitals now use EHRs. Physicians and patients have widespread access to the Internet and nearly everyone has a smartphone, providing many access points for viewing healthcare data securely. Smartphones in particular create the portability that is needed for consumer empowerment and the opportunity to integrate data with healthcare apps to manage a patient’s health. Uniform standards are being drafted per the 21^st Century CURES Act that will enable EHRs to share information. The technology and the requirements are – finally – coming together.

We are ready to go the last mile. And let me show you how CMS is running towards the finish line.

First of all, privacy and security of patient data will be the center of all of our efforts. We must protect the confidentiality of patient data, and CMS is completely aligned with, VA, the NIH, and ONC, and the rest of the government, on this objective.

CMS will be announcing a complete overhaul of the Meaningful Use program for hospitals, and the Advancing Care Information performance category of the Quality Payment Program. Ensuring the security of healthcare data will be an absolute requirement in order to avoid negative payment adjustments or to receive an incentive payment. Our new direction will not only reduce time and costs, but will also be laser focused on increased interoperability and giving patients access to their data across all of our programs.

Last year, CMS finalized requirements for certain programs that providers begin using 2015 Edition certified EHR technology starting in 2019. This version ensures that systems will be able to share information with patients and care teams via open application programming interfaces – or APIs, so patients can easily take their data to other providers and can give access to their data to app developers. CMS believes that the future of health care data interoperability centers on the development and implementation of open APIs.

We need more clinical and payment data being exchanged via APIs, and that data sent to both the provider and consumer. The administration is serving as a convener – joining with patients, clinicians, and innovators to develop more open source APIs for use across the entire digital health information system. And, in addition to APIs, our vision of interoperability by this administration includes not only EHRs, but the entire digital health information ecosystem.

We have also taken significant steps to make sure that providers and hospitals are not engaged in data blocking. We will not tolerate this practice anymore.

Let me be crystal clear, the days of finding creative ways to trap patients in your system must end. It’s not acceptable to limit patient records or to prevent them and their doctor from seeing their complete history outside of a particular healthcare system.

Too many patients suffer from this lack of control, and it is the priority of this administration to ensure that every patient and their doctor can receive free and timely access to their electronic data.

We are also going to overhaul the documentation requirements of Evaluation and Management codes to make it easier for providers to use their EHRs. These are the codes that doctors use to bill Medicare for patient visits. And the billing requirements are outdated, so we will be updating and streamlining them so that doctors can spend less time using their EHRs, and more time with their patients.

But I’m not just standing up here telling industry what to do. The MyHealthEData initiative is leading by example.

I’m sure many of you are aware of Blue Button, but for those of you that aren’t, some Medicare beneficiaries have had, for quite some time, the ability to download their Medicare claims information.

If the goal of Blue Button was to give patients more control of their information, it had a long way to go.

Currently, we give our beneficiaries this data in excel or pdf forms, without any context or help in understanding what the data is telling them. As I said before, giving patients access to their information is useless if that information is hard to obtain, or hard to understand. So I’m happy to announce a new direction for Blue Button that we’re calling, and believe me, once you hear the name you will be floored by its creativity – BLUE BUTTON 2.0.

But don’t be mistaken; while the name might be common, Blue Button 2.0 represents a major step towards giving patients control of their health information.

Blue Button 2.0 is a developer-friendly, standards-based API that enables Medicare beneficiaries to connect their claims data to secure applications, services and research programs that they trust.

Beneficiaries will maintain complete control in how and when their data is used, but the potential benefits to our recipients are endless.

CMS’ commitment to protecting beneficiary data was top of mind as we developed Blue Button 2.0. It uses the same secure cloud infrastructure that supports a number of existing CMS IT systems.  In addition, to help beneficiaries make good decisions about whom they share their data with; CMS will require that App Developers go through an approval process based on industry best practices before they are granted access to beneficiary data.

The possibilities for better care through Blue Button 2.0 data are exciting, and may include enabling the creation of health dashboards for Medicare beneficiaries to view their health information in a single portal, or allowing beneficiaries to share complete medication lists with their doctor to prevent dangerous drug interactions.

So far, over 100 organizations, including some of the most notable names in technological innovation, have joined the CMS developer preview program. And we expect more to join once Blue Button 2.0 is launched to consumers.

Please take some time to stop by our CMS booth to see a demo that will give you a taste of what’s to come. These new apps and programs will advance patient-centered care. Blue Button 2.0 will create an ecosystem where tech innovators are competing to serve Medicare beneficiaries and their caregivers, finding better ways to use their claims data.

In Medicaid, we will be working with states on how they can make their claims data available to their beneficiaries as well.

And now, I call on all insurers to do as we have done today, and give patients their claims data electronically. Over the course of the year, we will be reexamining all of our partnerships and relationships with health insurers to find ways to make it clear that we are serious about putting patients first and giving them control of their records, not merely in words, but in deed.

CMS will also be reviewing our quality measures across our Stars programs to shift our focus to patient access to data and we will be studying ways to reduce duplicate and unnecessary testing. We owe it to all Americans to make sure they don’t have to suffer the pain of conflicting medications and duplicate tests, and that they aren’t paying for unnecessary health costs.

For those in the healthcare industry that are already working to make health records, safe, secure, easily accessible, and easily understandable to patients, we give you our full support and we applaud your efforts. And we will work with you to continue on this path.

However, for those of you that still subscribe to the outdated idea that you can deny patients’ access to their health records, I encourage you, in the strongest way, to change course and accept that those practices will come to an end.

As we move towards building a healthcare ecosystem where data flows freely, let us also double down on our commitment to protecting their privacy and making sure that our efforts to protect them from fraud and abuse are as vociferous as our efforts to give them control of their records.

Patients should always feel secure in the knowledge that their records are safe. We are working with privacy groups and experts to make sure that as we create the tools to allow our beneficiaries to control their information, they are protected from having their information used in ways they haven’t authorized.

Today I challenge the entire healthcare industry to join us in achieving the goals of the MyHealthEData initiative. Let’s empower patients to access to their records, so that they may seek treatment whenever and wherever they choose.

We cannot do this alone, but together we can accomplish wonderful things. Ten years from now let’s look back on this conference and the launch of MyHealthEData as the beginning of a new era in patient care and empowerment, and celebrate the advances that we can’t even imagine today. And for all patients, let’s not let what’s been achieved this week in Vegas, stay in Vegas!

Seema Verma is a CMS administrator.