Believing that the EHR represents a "Gutenberg moment" for all of healthcare, he decided to create neurology-specific EHR extensions for Epic. "We've been on a quality journey over the last five years that I think has succeeded in accomplishing just that."
The initiative started with Maraganore and his team meeting with neurologists to imagine "the perfect office visit" for a patient with the disorder they specialized in—"Parkinson's, stroke, multiple sclerosis, headache, brain tumors, or epilepsy."
He asked them questions:
- If you could spend as much time as you needed, what would you want to learn from that first visit with the patient?
- How would you define the patient's disorder? What are the outcomes that matter most to your patients and to you?
- What are the best ways of measuring those outcomes in the office, and do you have permission, parenthetically, to use those outcome measures?
- And then what factors do you know to independently associate or influence those outcomes, and how would you capture those independent variables also?
Those meetings yielded consensus to focus on conditions which were progressive, variable, and unpredictable. "That's where we have the most opportunity to learn and to improve," Maraganore says.
With the modifications to the Epic system, "neurologists can write very comprehensive, perfectly spelled, perfectly paginated, perfectly structured progress notes. And every click of the mouse would also capture data that could be analyzed to improve quality and to conduct practice-based research and to make discoveries."
Patient-approved and Carefully Vetted
Before such discoveries, NorthShore had to convince patients to enroll in the precision medicine portion, to give blood samples for extraction and storage. "As of today, 97% of our patients consent at the point of care," Maraganore says. "Of those, 88% say, 'you can use this not only for your own research, but provided you protect my identity, you can share it with any investigator doing any genomic research at any institution.'"
NorthShore's goal is to enroll 1,000 such patients in each of its 11 cohort studies. It's off to a good start: So far, it has DNA from 700 migraine patients, more than 500 Parkinson's patients, even more than 300 patients with restless leg syndrome, and so on.
It's reassuring to me that these EHR extensions have been carefully vetted with American Academy of Neurology quality guidelines and parameters, as well as common data elements from the National Institute of Neurlogical Disease and Stroke, and guidelines from subspecialty societies.
Scott Mace is the former senior technology editor for HealthLeaders Media. He is now the senior editor, custom content at H3.Group.