Consensus that EHR vendors and profit-hungry hospitals are intentionally making it hard for patients and others to access date is based on evidence – much of it put forth by the Office of the National Coordinator for Health IT – that is largely anecdotal.
With $32 billion spent already to achieve the meaningful exchange of healthcare and patient information, the federal government is hard at work trying to find where and how data is being blocked.
But whether data blocking is intentional, or not, remains a subjective question based largely on anecdotes that deserve speculation.
Many experts and industry leaders say they’ve never seen any cases of data blocking — others insist it’s more complicated than that. Some complaints are the result of a lack of technological progress, lack of standards, and misconceptions.
What’s the truth about data blocking?
That all comes down to who you ask.
“I’ve never seen information blocking by anyone — vendor or hospital,” said John Halamka, MD, chief information officer of Beth Israel Deaconess Medical Center, Harvard medical professor and co-chair of the HIT Standards Committee at ONC. “I’ve seen a lack of infrastructure, a lack of a business model and a lack of a clinical imperative to share data, but never purposeful blocking.”
That purposeful distinction is substantial. But ONC still maintains that willful data blocking is a pressing problem that has to be addressed.
“From the evidence available, it is readily apparent that some providers and developers are engaging in information blocking,” National Coordinator Karen DeSalvo, MD, explained in a post on ONC’s site. It’s a serious problem, she said, and “one that is not being effectively addressed.”
That assertion appears to be based on a congressionally mandated report issued by the Office of the National Coordinator (ONC) in April 2015, which also calls for congressional action to put a stop to the data blocking.
But ONC has said it drew conclusions about the widespread data blocking problem based on “anecdotal evidence” collected from 60 unsolicited complaints, as well as phone surveys and a review of public records, testimony, industry analyses, trade and public news media and other sources.
DeSalvo is not the only to contend that data is being blocked for nefarious reasons.
“It is very frustrating not be able to send information electronically to another party, to find out they can’t receive it digitally, or that it doesn’t make sense when it’s received,” said David Kibbe, MD, president and CEO of DirectTrust, a nonprofit collaborative to support interoperability.
But he doesn’t feel it’s always just an innocent aspect of misplaced priorities or misaligned technology.
“In a fee-for-service health care system, information isn’t just power, it’s money, too,” said Kibbe. “So it is natural that we’ll get information hoarding, information blocking, and information channeling as means to an end by some entities.”
Is data flow being choked for other reasons?
Mari Savickis, vice president of federal affairs for the College of Healthcare Information Management Executives, or CHIME, said data exchange is improving on a daily basis – even if it’s being exchanged in less technical ways at times, through secure email, fax and even with paper.
“We’re moving toward improving data exchange; the numbers are going up,” Savickis continued. “Are we at the point of seamless data exchange? No. Is it being blocked? No one is setting out to do that.”
Savackis cited examples that she’s heard from CHIME members that could be interpreted as data blocking, but are far from it.
They are the result of lack of granularity in standards and financial limitations.
The looming question: Who foot the bill for exchange?
Kerry McDermott, vice president of public policy and communications at the Center for Medical Interoperability says all the finger-pointing about data blocking isn’t helpful.
“It’s more of a systemic issue, not limited to a specific party,” McDermott explained. “In the grand scheme of things, sharing data is new.”
In the past, it wasn’t beneficial for doctors and vendors to share data and so it follows, she added, that most of the technology in place today was not exactly engineered with interoperability in mind.
But now with the changes in value-based care reimbursement models, sharing data is going to be imperative.
Gary Dickinson, co-chair of HL7’s EHR workgroup said ONC seems to believe that if information is not flowing it’s being blocked. But that might not necessarily be the case.
“More likely it’s a situation where there’s no existing electronic infrastructure to facilitate direct sharing,” Dickinson said. “Infrastructure requires investment and who’s going to make that investment?”