"We also appreciate the expertise of our NPBRN sites, so when they identify quirkiness in our tools… we invite them and encourage them to give us the feedback," Maraganore says. "If there's consensus across the NPBRN to make the changes, we make the changes, and then we disseminate the upgrades to all the participating sites."
Early learnings from the effort include identifying cognitive impairments in early Parkinson's patients, and alerting clinicians to check in with such patients about any concerns they or those close to them have about their safety while driving a motor vehicle.
"What we basically validated is the need for a history and a physical that both give a valuable perspective on the patient's illness and that are not necessarily measuring the same things. You really need to complement them both to understand what's wrong with your patient."
Can the efforts of neurologists also show the rest of healthcare how to make lemonade out of EHR lemons? It will require leadership such as NorthShore and its network partners are showing. Cooperation will yield faster progress than each academic center of excellence simply competing the old-fashioned way, not sharing information enough to move an entire profession forward.
The effort will also require NPBRN and others to extend beyond the Epic EHR. "Only about 40% of neurology practices are in Epic," Maraganore says. "We know that there is a need to extend our project from the Epic EMR. If we're successful in demonstrating that we can disseminate structured tools within the Epic platform to other sites, we can then go to neurology practices on the Cerner or Allscripts systems, or any of the other popularly-used platforms."
"[Then we can] say 'we will share with you our fields, forms and workflows. If you can build them into our EMR system, we would be happy to share with our content.'" He also points out that for deep analysis, clinical informaticists extract the data from the EHR and present it via a data warehouse, further suggesting EHR-agnostic platforms to come.
Judging by the patient biobanking participation rates in this case, it's also clear that today's slow pace of clinical trials could be supplanted in a few years by patient-driven, data-driven healthcare research, much as we are now seeing in other professions. I find Maraganore's recently published findings a reason for optimism.
Scott Mace is the former senior technology editor for HealthLeaders Media. He is now the senior editor, custom content at H3.Group.