For Ree Gifford, the clearest picture of disconnected healthcare data came from her own family.
A relative facing surgery for gynecologic cancer arrived at the hospital that morning with a box of paper records, unwilling to trust that the systems behind her care had what her team needed.
Ms. Gifford, Vice President of Clinical Advisory at ELLKAY and a Registered Nurse, spent 15 years at the bedside before moving into healthcare data. Asked what disconnected data looks like during a patient encounter, she pointed to that morning.
“It looks like a patient carrying a box of paper records because she doesn’t trust the system to have what her team needs – and on the morning of surgery, she was right,” Ms. Gifford said.
Technically in the chart
Her relative’s surgery took place at a major academic cancer center, while her local provider and hospital were about 30 miles away. Her care was split between two EHRs. Some information moved between them through an interface, but most arrived by fax.
Those documents could take days to weeks to reach the chart. Once they arrived, they were sometimes mislabeled. A comprehensive metabolic panel was filed as a urinalysis and with multipage documents, often only the first page was viewable.
The result was a record that looked complete but was not necessarily usable.
“The information technically existed, and it was technically in the chart,” Ms. Gifford said. “But a clinician looking for her labs would not have found them or would have found the first page of something and had to wonder what was on the rest.”
The problem, she said, was not carelessness. It was a process dependent on manual handling.
“That’s why I think of interoperability as a patient care issue and not just an IT one,” Ms. Gifford said. “If information can’t get to the right clinician accurately and on time, even the most skilled clinician can be limited by gaps in information.”
Bronwen Huron, Senior Product Marketing Manager at ELLKAY and a nurse, has seen the same pattern from inside the hospital. A fax can land in a health information management department, get filed in the wrong place and leave a clinician paging through hundreds of PDF pages in a hurry.
“Now you’re representing your hospital and your own license on a chart you can’t fully trust,” she said.
Not just a paper problem
The shift to electronic records has not eliminated the underlying issue.
Early in Ms. Gifford’s career, she cared for an ICU patient having a heart attack. As she prepared to give morphine, she realized the patient had a morphine allergy. She updated the paper chart, bracelet and registration system. A week after discharge, the patient returned with chest pain and morphine was ordered again.
“Disconnected data, whether it’s a sticker, a bracelet or a piece of paper, is just as dangerous as disconnected electronic information,” Ms. Gifford said.
She encountered the same problem decades later when a contrast allergy documented during an emergency department visit never made it onto her allergy list.
Digital records create their own friction, Ms. Huron said. Knowing which system is correct, which record is most recent and where the information a clinician needs actually lives still takes work.
“Twenty years later, we’re still facing the same problem,” she said. “Our systems still aren’t all connected, so you can’t just say the latest encounter is the right one. One system may have seen the patient in the past six months and still be missing what another system learned a year ago.”
Whether systems connect depends on contracts, agreements and organizational policy, along with the technology to make sure information flows where it is needed and nowhere the patient doesn’t want it. A connection alone doesn’t guarantee any of that.
The cost to trust
When patients sense that systems are not connected, they adapt.
“Patients who sense that disconnect start protecting themselves,” Ms. Gifford said. “That puts a burden on the patient and it tells us the relationship between patient and care team has already been strained before care has even begun.”
Patients may repeat their histories because they do not know what their clinicians can see. Clinicians, meanwhile, are left trying to maintain patient confidence while working around information they cannot fully trust.
That dynamic can also affect how clinicians view their organizations, Ms. Huron said. After moving from bedside care into EHR work, she heard from experienced nurses who no longer felt they could depend on their organizations to give them what they needed to do their jobs.
“We talk a lot about the trust of the patient, but there is a real erosion of a clinician’s trust in their organization after feeling almost abandoned to do their work without the tools to be successful,” she said.
Available isn’t the same as usable
Making records available is only the starting point.
“For information to be useful, it has to be correct, complete, timely and findable,” Ms. Gifford said. “It isn’t enough to move a document from one system to another. Someone has to make sure it arrives whole, is labeled correctly and lands where the clinician will actually look for it.”
For Ms. Huron, the challenge has also been one of volume. At the bedside, clinicians may have access to plenty of information, but the way it is formatted and delivered can make it difficult to act on. That lack of actionability, she said, has remained a persistent interoperability challenge throughout her career.
What good looks like
Good is a clinician who walks in already knowing about the emergency department visit and the medication change, and a patient who doesn’t have to retell either one. That doesn’t happen on its own. As Ms. Gifford pointed out, that means making sure the information arrives whole, is labeled correctly and lands where the clinician will look.
No organization controls every partner it exchanges data with, and few share the same technology stack as their neighbors. That means the work extends beyond establishing a connection. Organizations should determine what information moves, where it should land and who needs it in the context of a specific workflow.
That is the shift from connectivity to healthcare data orchestration: coordinating the interfaces, networks and data so information reaches the right clinician in a usable form and in the right workflow. ELLKAY supports the infrastructure behind CommonWell, a Designated QHIN under TEFCA, which connects more than 261 million individuals across 125,000+ provider sites. Matching the right records to the right patient is where everything else starts, and there have been no issues, either incorrect links or missed links, reported for over 99.99% of patients in CommonWell.
Matching is only one place a handoff can fail. When each vendor hands off at its product boundary, the handoffs between them belong to no one, and the clinician is the person who feels it. Closing that takes one partner, on one platform, that stays accountable for how the interfaces, networks and data work together after go-live, so there is no gap between products for information to fall into.
Ms. Huron said that distinction will matter even more as AI becomes part of clinical and operational workflows. “With AI, we can add more context than ever before, and that takes an orchestration layer that is aware of the context you’re working in,” Ms. Huron said.
What leaders should ask
For leaders at healthcare organizations evaluating their data strategies, Ms. Huron recommends starting with the people who use the information.
“Ask them what they need,” she said. “A lot of people make assumptions about clinical teams. Rather than asking which APIs they want, talk about the purpose.”
That means getting specific. How often does a clinician need a particular piece of information? Does it need to arrive in real time, or is an overnight batch sufficient? Is the information simply present, or can the clinician find and act on it in the moment it matters? How many vendors touch that information on its way to the clinician, and who is accountable for the handoffs in between them?
Measures of success should reflect those same questions.
“Do you have the information when you need it, or are you still drowning in it?” Ms. Huron said. “Are you still spending hours documenting and getting nothing back?”
Ms. Gifford suggested another, more visible measure of success: whether patients feel they have to carry their own records to make sure their care team has what it needs. Patients will always have good reasons to keep and manage their own information. The goal is that it becomes their choice and not their safeguard. If they still feel they have to, it is a simple sign that trust in the exchange of information has not fully caught up.
Those answers also show leaders what to look for in a partner. A vendor delivers its piece and hands off. A partner stays accountable for how data across the lifecycle works together to drive improved patient outcomes.
When it works
The difference between disconnected and connected care can show up in a single interaction.
Ms. Huron said the difference can be felt in the way a visit begins. Instead of asking a patient to reconstruct why they are there and who is involved in their care, a clinician can walk in already knowing the recent history, including an emergency department visit or medication change. That kind of continuity, she said, eases the burden on both the clinician and the patient.
None of that happens by accident. Someone decided what information moved at each handoff, where it landed and who saw it, and kept that working from pre-op through discharge.
Ms. Gifford has experienced that version of care as well. When her husband recently underwent a hip replacement, the surgeon called her that morning to say the procedure had gone well. From pre-op through physical therapy and discharge, the handoffs and validations were in place.
Less than a week later, he was performing music and grocery shopping.
For Ms. Gifford, the experience showed what connected information can make possible. “That is what it looks like when everyone has the information they need, and it’s what we want for every patient.”
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