When Marc Lalande, PhD, vice president of research for Tampa, Fla.-based Shriners Children's, came to the organization five years ago, he said he was "struck by how many research projects were going on in some 20 different locations" in silos.
Plenty of research, he said, but not a lot of collaboration.
"My number one priority was to leverage the fact that we see so many patients with different complex disorders. I wanted to build a system that allowed surgeons and physicians across Shriners to work together" using the vast amount of data available, Dr. Lalande told Becker's.
Shriners, a network of nonprofit medical facilities across North America, treats children with orthopedic conditions, burns, spinal cord injuries and cleft lip and palate. The system began using an electronic health record in 2012 to collect patient data. More than 25,000 children with rare diseases have been treated at Shriners in the past 11 years.
Dr. Lalande worked with Ashley Mills, research informatics manager, to create the Idea Incubator — a database that aggregates vital data from all Shriners facilities and makes it available to systemwide physicians and partners looking to do research on a particular project.
The incubator is used to mine information to inform grant applications as well as fund in-house research projects.
"Instead of looking locally for data, now our physicians can design a study and have access to all Shriners data. For example, let's say they want to find children with a clubfoot who had a certain type of treatment," Dr. Lalande said. "Before they might have access to information from a few kids who came to their location. With our Idea Incubator in place, they now have access to data from 110 kids. This is an attempt to transform how we do research."
Shriners physicians from Portland, Ore., and Northern California partnered to use the Idea Incubator to conduct a systemwide study looking at all children who have been treated at Shriners diagnosed with cerebral palsy. "For this particular project, we worked with the two lead investigators and enabled them to have access to a large number of patients for their study," Ms. Mills said.
Allowing physicians and researchers throughout the Shriners network to access all the information they need in one place "will be transformational when it comes to how we're able to provide care for our patients," she said.
First released in January 2022, there was a lot of positive feedback from physicians, who also made some suggestions for improvement. That led Ms. Mills to create dashboards for specific conditions such as scoliosis or burns.
"The system is very user friendly and with the dashboards, physicians can get further into the weeds of a specific topic. For example, beyond scoliosis, they can search for 'congenital scoliosis,''' she added, noting the physicians and investigative researchers have said they are using the tool and seeing value in it.
Another example of collaboration is between Shriners Children's and the Georgia Institute of Technology in Atlanta. The school has a pediatric technology center where thousands of people in the biomedical engineering field are working to advance medicine.
"This is huge for us," Dr. Lalande said in an April 18 article on the Shriners website. "It opens doors to all kinds of technologies that are being developed by these engineers," including artificial intelligence, remote intelligence, remote sensors for motion analysis, customized exoskeletons that can help with movement and more.
"Research only advances through collaboration," he said. "If you look at where research is now in 2023, at scientific publications that impact and change the world, they are done in groups that are multidisciplinary — a surgeon, for example, working with an engineer. These meetings are to bring people together so that the physicians will hear, for example, what the engineers are doing and how they can all work together to improve the lives of our kids."