Truth be told, we all can be a little scatterbrained about our own healthcare.

When a doctor asks about medications we once took or lab tests from long ago, we scratch our heads, make our best guesses, and wonder why someone doesn’t come up with a database that instantly keeps our health records up-to-date.

As it turns out, someone has been doing just that. 

Delaware doctors have real-time medical records for practically every Delaware resident right at their fingertips, thanks to a data-driven not-for-profit called Delaware Health Information Network (DHIN). Time-pressed medical providers say the organization has become an essential element in coordination of patient care, giving doctors a chance to devote more time to the patient, and less to the paperwork.

When they have a more complete snapshot of their patients’ past health history, doctors say they can feel more informed about the proper treatment path, with confidence that important clues have not been missed, and that troubling symptoms can be caught in time.

Ultimately, DHIN’s innovations also have the potential to play a big role in broader public health solutions, leveraging “big data” to battle diseases and pinpoint vulnerable populations in Delaware. DHIN’s data has already helped state health officials identify a troubling trend in traumatic brain injuries in Delaware. It may soon be helping fight against sickle cell disease and the threat posed by “forever chemicals.”

Connecting billions of medical records

“If you think about it, it’s kind of like we’re the central nervous system, or the glue that brings all of the pieces of a patient’s medical records together,” said Jamie Rocke, who manages DHIN’s business relationship management team. “Your data gets sent to us, and we take care of the rest.”

DHIN’s data supports clinical workflows to enable research and analytics. The insights drawn from the information can empower providers, policymakers, and researchers to identify trends and close care gaps. 

The data is also crucial for healthcare workers, as they use patient data to help see the full patient story and make better-informed decisions. DHIN works with personal health information (PHI), making data security a priority. The organization’s commitment to protecting the sensitive data it collects is highlighted by its ability to maintain a HITRUST certification, the gold standard for information security best practices. DHIN has been certified for its top-line services since 2017. DHIN also abides by all laws and regulations for appropriate use of data, including never selling patient data. 

DHIN was the nation’s first statewide health information exchange. It is now connected to every one of the state’s acute‑care hospitals, long‑term care and skilled nursing facilities, and nearly every clinical practice. Since 2007, DHIN’s team has digitized more than 1.2 billion lab results, creating a community health record of about 3.52 million patients used by nearly 20,000 healthcare workers across the state and region.

“We have clinical data on probably every Delawarean going back to 2007, as well as out-of-state visitors who sought care in the state,” said Dr. Jan Lee, CEO of DHIN. “If you’ve ever been to a hospital or emergency room, if you’ve ever had lab work done in Delaware, if you’ve ever had an X-ray done in Delaware in the last 15 years, we probably have information about you in our database.”

Bringing order to a fragmented system

It’s all done with the goal of providing patients’ up-to-date medical status to every sector of the healthcare system, including doctors, care coordination teams, and especially the patients who find themselves visiting a sometimes-bewildering array of providers, labs, and specialists. 

Americans enjoy better care today than ever, but better care inevitably means more records, and potentially more confusion.

“One of the biggest frustrations that the typical consumer of healthcare experiences is fragmented care,” Lee said. “These days, you hardly ever have one doctor who does everything. So, then the real question becomes, are they talking to each other? Is there really a team of people who are taking care of you and communicating with each other? And sadly, in many cases, the answer is no.”

Established by the Delaware General Assembly as a public-private partnership in 1997 before becoming self-sufficient in 2012, DHIN’s purpose was to create some order out of that jumbled system. After taking in medical reports from its industry customers, DHIN’s team hammers the data into a common format, passing lab reports and hospital records back and forth between providers.

“Back then, a big portion of the work was faxing data. We would just act as a big giant router of data, from labs back to the primary care provider,” said Alex Vaillancourt, DHIN’s chief information officer. “It evolved from there to a point where we asked, ‘Why shouldn’t patients have access to that data as well?’

“In some cases, patients may have been to four doctors in the last four months, so it helps patients manage their own care,” Vaillancourt added.

Delaware’s industry leaders turn to DHIN

As the healthcare field has evolved and expanded, so has DHIN. Today, six of the state’s acute-care hospitals are part of its network, including industry leaders like ChristianaCare, Nemours, Bayhealth, and Beebe Healthcare. Data is shared with all major commercial  labs, six radiology firms, about 95% of imaging centers, and four urgent-care centers. Labs and providers pay a fee, and DHIN handles the back-and-forth delivery of all results, transfers, and discharges. DHIN also supports certified-results delivery interfaces with more than 30 different models of electronic health records, representing 80% of users statewide.

DHIN’s network even reaches into nearby states, where healthcare facilities share information about Delaware residents who receive treatment in Maryland, Pennsylvania, Washington, D.C., and West Virginia.

“DHIN makes that information available in our Community Health Record, which is a provider portal that allows us to aggregate data that is generated in many locations, many sources over a period of time, and create a single longitudinal record that pulls all of that together,” Lee said.

That’s especially helpful when the patient – or even the physician – is new. “Just by logging on, the doctor can at least start out with a clue about the health status of that individual,” Lee said.

With that mountain of data in hand, DHIN has developed even more ways of using it to help Delawareans’ healthcare journey:

  • Healthcare Claims Database (HCCD): DHIN routinely collects healthcare claims, enrollment and provider data from Medicare, Medicaid, and the seven largest commercial health insurers in Delaware. DHIN sees this as a potential foundation of broader public health initiatives, helping Delaware’s decision-makers identify areas for improvement across the whole healthcare system.
  • Delaware Portable Orders for Life-Sustaining Treatment (POLST): This program, formerly known as DMOST, ensures that end-of-life wishes of patients are clearly communicated and honored across all care systems and serves as the legal equivalent to a “Do Not Resuscitate” (DNR) form.
  • Clinical Trial Recruitment Services: An effort by DHIN to bring together healthcare providers, researchers, and patients to participate in clinical studies here in Delaware. 

New needs arise all the time, and DHIN is ready to take them on. Reacting to client frustration over death notices that seemed to never reach the relevant caregivers, DHIN tweaked its system so that patient records are “flagged” appropriately, and in a timely fashion.

“That’s one of those cases where our clients said, ‘Hey, this seems like the whole community should come together to solve this thing that none of us can solve on our own,’” Vaillancourt said. “That’s one great thing about DHIN – we have become top-of-mind for clinicians when there’s a need that we can help develop as a statewide approach.”

In most cases, the patient may not even know that a sophisticated computer system is quietly compiling their records. But they end up seeing the results in how their cases are handled, doctors say.

For more information about DHIN’s services, please visit dhin.org.