University of Iowa Department of Orthopedics and Rehabilitation Professor Benjamin Miller, MD, MS, and senior application developer Matthew Watson, MBA, RN, are leading an effort to create a tumor registry as part of a broader effort by the American Academy of Orthopaedic Surgeons to expand the number and types of patient registries nationwide.

What makes the Iowa team’s tumor registry unique is its depth. Existing data fields in patients’ electronic medical records (EMRs) typically aren’t sufficient to garner the data needed, according to Miller, who notes that information on tumors is very limited. He and Watson were interested in specific details such as exactly where the tumor was located and how it was treated.

Their goal was to work within the EMR so providers could easily enter the detailed data necessary to make a more meaningful registry.

“What I mean by ‘meaningful’ is we wanted to be able to not just comment on quality and patient safety, which is the primary intent of the registry, but we also wanted to collect research-quality data that may inform future clinical questions regarding patient survival, function, and quality-of-life,” Miller says.

This, he adds, would give the registry “next-level” information that doesn’t exist in other registries. Examples include how are people recovering, whether they’ve been able to return to daily activities, and whether they have lingering pain.

Watson, who has a background in nursing and leads the department’s EMR development team, created a form within Epic, the patient records system used by University of Iowa Health Care and other hospitals and health systems nationwide. Data entered in the form then becomes part of the registry.

“Any tool developed within our EMR by myself or my team, should not dictate the workflow—the workflow should dictate the tool,” Watson says. “I worked closely with Dr. Miller and focused on having the forms for the registry make sense to him and follow his train of thought as a clinician. It allows the documentation to be captured discretely but not at the expense of interrupting clinic flow or train of thought, which was the primary goal.”

Currently, five health centers are contributing data to the tumor registry through their own Epic EMR systems, while Watson and Miller are working to finalize a way to easily disseminate the forms to all other sites that are using registries.

“One of the things I am most excited to see is where this project goes over the next five to 10 years,” Watson says. “The fact that sites all over the country will be collecting a standard data set for patients with sarcoma or musculoskeletal bone disease gives me hope that our work could someday help drive future innovation, improvements in patient care, and maybe even potential cures.”