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WASHINGTON, D.C.—Federal health IT leader Donald Rucker, M.D., said an upcoming interoperability rule will include “solid” privacy protections for patients as they share their medical data. 

Speaking at Health Datapalooza on Tuesday, Rucker—who is the head of the Office of the National Coordinator for Health IT (ONC)—acknowledged that privacy in a digital world is a challenging issue. But he reiterated his perspective that patients should be able to easily access and share medical data.

“It is our human right as patients to have access to our data,” he said.

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Rucker was pushing back on health IT vendor Epic’s lobbying efforts against the proposed rules, including an email Epic CEO Judy Faulkner sent to customers encouraging them to sign an opposition letter. The letter cited risks to patient privacy and intellectual property if the rules are finalized now.

According to reporting from CNBC’s Chrissy Farr, about 60 health systems signed the letter.

“Most of their customers did not sign on to that letter,” Rucker said. “If you parse out the big academic medical centers, only three out of 100 AMCs signed on.”

He also called out hospitals that signed the opposition letter due to their claims about data privacy concerns but then disregard patient privacy when filing lawsuits for unpaid medical bills.

“One of the signers of the letter is known for taking thousands of patients to court. If you take someone to court, that information becomes public discovery. Their medical care is now public. It’s part of the court record,” he said. “Looking at protecting privacy, we need to walk the walk here as we look at who is saying what and letter-writing campaigns.”

Almost a year ago, ONC issued a proposed interoperability and information-blocking rule that defines the demands on healthcare providers and electronic health record (EHR) vendors for data sharing. The rule also outlines exceptions to the prohibition against information blocking and provides standardized criteria for application programming interface (API) development. 

Department of Health and Human Services (HHS) leaders have not offered a timeline for when the rule will be published, but many have speculated it will be released during the Healthcare Information and Management Systems Society conference in March.

While Epic and many hospitals have come out against the interoperability rules, many technology vendors, including Apple and Microsoft, along with health plans and consumer advocacy groups have urged HHS to move forward with publishing the rule.

Four healthcare leaders recently penned an op-ed in Health Affairs calling for ONC to publish the rule immediately. Omada Health’s Lucia Savage and University of California, San Francisco’s Aaron Neinstein, Julie Adler-Milstein and Mark Savage said the ONC rule will not make the current consumer privacy protections worse.

“All health care stakeholders who are concerned about that issue should raise it with Congress and state legislatures, which have authority to act, rather than request to delay the ONC’s rule, delaying critical improvements to interoperability, access, innovation, and ending information blocking,” the authors wrote.

APIs are the technology used to link IT systems, such as EHRs, with apps and will help bring healthcare into the modern app economy, according to Rucker.

ONC’s vision is for patients to choose what apps to use, he said

“We’ve often looked at interoperability in a narrow view, which is just as a replacement for moving the patient’s chart. Modern computing and APIs offer a vastly richer and more empowering global computing environment. Well-built APIs can do almost anything that your creativity allows,” he said.

Before Rucker took the stage at Health Datapalooza, HHS Secretary Alex Azar also addressed the upcoming interoperability rules and the Trump administration’s commitment to putting “patients in charge of their data” and called out industry stakeholders who are “defending the status quo.” They are protecting a health records system that is “segmented and Balkanized,” he said. 

“We have a serious problem—and scare tactics are not going to stop the reforms we need,” Azar said.

Health technology company Seqster is focused on helping patients bring all their health information into one place.

The San Diego-based company, which launched in 2016, announced Thursday it secured backing from Japanese pharmaceutical giant Takeda Pharmaceutical. 

The companies did not disclose the funding amount.

Case Study

Across-the-Board Impact of an OB-GYN Hospitalist Program

A Denver facility saw across-the-board improvements in patient satisfaction, maternal quality metrics, decreased subsidy and increased service volume, thanks to the rollout of the first OB-GYN hospitalist program in the state.

See how

The funds will be used to accelerate the adoption of the company’s interoperability technology for enhancing clinical trials, patient engagement and outcomes, the company said.

“Seqster’s technology is a very unique platform that addresses interoperability on not only a nationwide scale but also globally. Interoperability is one of the biggest barriers to applying precision medicine to clinical trials and patient engagement,” Bruce Meadows, head of investments at Takeda Digital Ventures, said in a statement.

Seqster’s platform retrieves, parses and harmonizes multidimensional data sets to help accelerate the entire drug development process and provides clinical trial participants a platform to share their data with investigators in real time creating a longitudinal health record, according to the company.

Before the Takeda investment, the company raised at least $4 million in seed funding.

The company’s name, Seqster (pronounced seekster), comes from the idea that everyone is “seeking” health data, company CEO and co-founder Ardy Arianpour told FierceHealthcare during Health Datapalooza this week.

Arianpour said he was motivated to launch the startup as a result of his mother’s experience as a cancer patient and the challenge of aggregating health data from multiple providers and hospitals.

As a health technology entrepreneur, Arianpour has a background in genomics and big data. Prior to starting Seqster, he helped bring next-generation DNA sequencing to the clinic as chief strategy officer of Pathway Genomics as well as senior vice president of Ambry Genetics, which Konica acquired for $1 billion in 2017.

Seqster aims to provide “person-centric interoperability,” he said.

“When I started on this journey I didn’t know what interoperability was,” he said. “Recently a former executive from a large EHR vendor came to us and said: ‘You cracked interoperability.”

The platform is designed to pull together episodic clinical electronic health record (EHR) data, baseline genetic DNA results and continuous fitness/wearable device data all in one place. The company’s technology standardizes and harmonizes different data sources on the back end and then organizes and visualizes those health data in an easily accessible format.

Arianpour compares the platform to the personal finance management platform Mint.com, which was designed to be a platform that brought all of an individual’s financial information together to a single place.

Seqster is not a consumer-facing platform, but licenses it to enterprise customers such as providers and payers. The platform currently connects users to more than 3,600 healthcare providers and over 150,000 hospitals and clinics nationwide.

Other companies taking a stab at aggregating patient records include Picnic Health, which collects and digitizes health records, and PatientBank, which offers online medical record sharing. Apple also launched its Health Records feature that is now supported by hundreds of hospitals, medical clinics and specialty practices.

One distinction from Apple Health Records is that Seqster is platform-agnostic, the company says. It also enables families to aggregate health data to form a multigenerational health record, an idea that has raised privacy concerns. 

In January, the company added new interoperability features it says will help its customers more easily share longitudinal health information across various sources. Seqster improved its connectivity to providers by adopting the Fast Healthcare Interoperability Resources (FHIR) standard through the FHIR application programming interface, the company said.

The company says the new platform can help healthcare providers and health plans come into compliance with upcoming federal interoperability regulations to be released by the Office of the National Coordinator for Health IT and the Centers for Medicare & Medicaid Services.