April 24, 2019

The big story from the 2018 meeting of the Health Information Management and Systems Society (HIMSS) was artificial intelligence.  At HIMSS 2019, it was information blocking.  Why?

Defined on HIT.gov as the deliberate and unreasonable interference with the exchange and use of electronic health information (EHI), information blocking (or data blocking) is a prime target of the two new proposed interoperability rules issued by the Department of Health and Human Services in February shortly before HIMSS 2019.

In separate but closely related proposals, both the Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology (ONC) make clear their resolve to deter both overt and subtle forms of a practice that the federal government and healthcare stakeholders have pinpointed as a major impediment to creation of the interoperable healthcare learning environment mandated by the 21st Century Cures Act (Cures Act) of 2016 and the HITECH Act of 2009.

“Information blocking is a serious problem because it can prevent timely access to information needed to manage patients’ health conditions and coordinate their care.  Further, it can prevent information from being used to improve health, make care more affordable, and research new treatments and cures,” ONC states in a flyer (pdf) that encourages the reporting of information blocking at http://www.healthIT.gov/healthITcomplaints.

Potential warning signs of information blocking include:

• Cost prohibitive fees for exchanging EHI
• Policies or contractual arrangements that prevent or limit EHI sharing  with patients or their healthcare providers
• Inappropriate citing of the HIPAA Privacy Rule as a reason for not sharing information
• Health providers or IT vendors limiting or discouraging information sharing with other providers or users of other IT systems
• Technology designed or implemented in non-standard ways that lessen the ability to exchange and use information with other systems and applications that follow nationally recognized standards
• Patients or healthcare providers becoming “locked in” to a particular technology or healthcare network because their EHI is not portable.

In a 2015 report to Congress, ONC stated that “current economic and market conditions create business incentives for some persons and entities to exercise control over electronic health information in ways that unreasonably limit its availability and use. . .  These concerns likely will become more pronounced as both expectations and the technological capabilities for electronic health information exchange continue to evolve and mature.”

The report represented “a tectonic shift in the narrative surrounding health information exchange (HIE),” according to health IT policy researcherJulia Adler-Milstein.  The federal government had assumed that technology companies and healthcare providers would develop ways to capture and use the benefits of HIE as they discovered what those benefits were.  What the government did not anticipate was that provider organizations and vendors might find more benefit, or more certain benefit, in not sharing the information, Ms. Adler-Milstein said.

While health IT developers understand that “interconnectedness is imperative if the next generation of digital health solutions are to realize their potential,” according to an article in Healthcare Dive, one health IT CEO interviewed for the piece said that interoperability and data sharing with competitors often has been “an afterthought. . .  All of a sudden you’re big, you have lots of data, people are asking for access to it and businesses, consistently, feel they’ve earned the right to that proprietary advantage.”

A national survey of HIE leaders reported that 25 percent said health systems routinely coerce providers to adopt and use certain EHR technology.  Half of respondents said that EHR vendors routinely engage in information blocking, either by designing products with limited interoperability or by charging high fees.

It appears all of that could change.  “The days of finding creative ways to trap patients in your system must end,” said CMS Administrator Seema Verma at HIMSS 2018.  “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.”

The proposed ONC rule intends to codify the definitions of interoperability and information blocking, and just as important, clarify the practices, including some required by law, that do not constitute information blocking and therefore, would not be penalized.

The rule would also establish penalties, including potentially hefty civil monetary penalties, for health IT developers, health information networks and health information exchanges that interfere with the exchange and use of EHI. In order to maintain ONC certification, health IT developers would be required to prove that they are not engaging in information blocking.  Healthcare providers could also be investigated for information blocking by the Office of Inspector General and be subject to disincentives.  In addition, the CMS rule would require providers to answer questions regarding participation in information blocking, and CMS would publish the information.  “Patients would have the ability to know which providers may or may not be able to give them their healthcare data and then they can decide to take action,” Ms. Verma said at HIMSS 2019.

Ms. Adler-Milstein stated it another way: “when it comes to sharing electronic patient health information, public good should trump private gain.”

Comments on the proposed rules are being taken until May 3, 2019.