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Giving patients control of their health information will help give patients control of their health

Jared Kushner and Seema Verma argue for progress in digital health care data.

President Donald Trump sits at a table with Seema Verma, administrator of the Centers for Medicare and Medicaid Services.
Donald Trump with Seema Verma at the White House last year
Mark Wilson / Getty

This is a contributed post by Jared Kushner, senior adviser to the U.S. president, and Seema Verma, administrator of the U.S. Centers for Medicare & Medicaid Services. We’ve also asked Aneesh Chopra — former U.S. chief technology officer under the Obama administration and current president of CareJourney — to write a response, which you can read here.


Giving patients control of their health information

Health innovation is accelerating at a striking pace. In the past year, we have seen advances in treatments that could not have been imagined a generation ago. Yet while technology is changing every area of our lives, we continue to lack control of our most coveted information: Our health data. And as the costs of health care continue to rise, Americans are demanding this control so that they may make the best decisions based on the value and quality of their care.

The President has been clear through executive order that his administration is committed to putting patients in control of their health care, so that they may drive competition and better value. Agencies across his administration have been working to make these goals a reality by leveraging innovation to create efficiencies and by eliminating government burdens that have deprived Americans of the ability to control their own health information and shop for value.

While tremendous progress has been made in ensuring health providers use Electronic Health Records (EHRs), patients too often are not able to access and share their records, and their doctor often lacks the complete picture of their health. The inefficiencies created by closed data systems can lead to duplicative testing, possibly missed opportunities to improve outcomes and an inability for doctors to coordinate patient care. And in an era of artificial intelligence, precision medicine and robotic surgeries, our doctors paradoxically are reconciled to the use of fax machines to transmit patient data.

Last week, the administration launched the MyHealthEData initiative, a major step toward truly putting patients first and giving them the control of their health information that they demand and deserve. This administration-wide initiative, led by the White House Office of American Innovation, is designed to empower patients to control their health data and decide how it will be used, all while keeping the data safe and secure. And the administration is putting a strong, robust effort behind changing policies to accomplish these goals.

The Department of Health and Human Services (HHS) — through the Center for Medicare & Medicaid Services (CMS), the National Institutes of Health (NIH), the Office of the National Coordinator for Health Information Technology (ONC) and the Department of Veterans’ Affairs — will use their authority to encourage and reward health care providers to fully adopt EHR and data sharing.

CMS is showing its commitment to putting patients first by relaunching its existing Blue Button portal to empower Medicare beneficiaries with the ability to gain direct control over their Medicare data so that they may make better health care decisions and achieve better outcomes. In Blue Button 2.0, beneficiaries will be able to authorize that their data be shared with caregivers, or even app innovators who may design technologies that enable these beneficiaries the ability to make more informed health care decisions.

The possibilities for better care through Blue Button 2.0 data are seemingly limitless, and may include enabling the creation of health dashboards for Medicare beneficiaries to view their health information in a single portal, or allowing pharmacies to know whether a patient is getting healthier due to medication adherence.

Soon CMS will release policies that make clear that providers and health plans must share data with patients in a usable electronic format. In doing so, we will double down on our commitment to protecting consumer privacy and make sure that our efforts to protect Americans from fraud and abuse are as rigorous as our efforts to give them control of their records.

Just imagine if we could choose to track our medical history throughout our lives, aggregating our doctors’ visits, claims data and health information gathered every second through wearable technology. Or if we could authorize researchers to use our information to develop cures that could save millions of lives, furthering the efforts at the NIH and ONC with their Sync for Science program.

Much work has been done to achieve adoption of electronic health records, thereby transitioning patient information from paper to digital form. Now we must travel the last mile to a destination where patients have control of their own health records and innovators are unleashed to develop new technologies that create better health outcomes and less of the frustration that is so often felt by patients and doctors alike.

Once we have achieved a system in which information is flowing freely from the patient to the provider, the advances in coordinated patient care that will result will be even greater than we can imagine today. We will create a health care ecosystem that allows and encourages the health care market to tailor its products and services to compete for patients on the basis of value convenience, customization and quality, in a way that continues to keep privacy at the forefront. And the healthier our citizens and the more efficient our health care system, the lower our costs will be.

The days of finding creative ways to hold patients hostage to a particular health care system soon will be over. It will no longer be acceptable to limit access to patient records or prevent patients and their providers from seeing their complete health history.

Through MyHealthEData, we have the opportunity to place our health data in the palm of each of our hands, and it is the goal of this administration to remove the barriers that are preventing this from occurring. When we control our own health information, only then will we truly be empowered to make our own health care decisions. In a world where Uber and Google have become verbs, technology has the power to put patients in the drivers’ seat of their own health care, where they belong.


Jared Kushner is the senior adviser to the president and the director of the White House Office of Innovation. Seema Verma is the administrator of the U.S. Centers for Medicare & Medicaid Services.


This article originally appeared on Recode.net.