The faster medical research moves the more quickly cures can be found for countless children’s diseases. But one of the greatest delays researchers face when trying to solve medical problems is finding enough patients to study.
“Enrolling patients in a clinical trial to study a rare condition could take years,” said Mark Del Beccaro, MD, a researcher and vice president of medical affairs at Seattle Children’s.
But now a federally funded non-profit has awarded Children’s and seven other pediatric hospitals funding to create a national network of patient data with the goal of speeding up medical research and improving patient care.
The Patient-Centered Outcomes Research Institute (PCORI) will contribute $7 million over the next 18 months to create a national network of pediatric patient information – the National Patient-Centered Outcomes Research Network (PCORnet). The network will pool medical data from 11 healthcare organizations and 18 patient-powered networks.
Researchers, clinicians and patient families will be able to access medical data on more than one million children using PCORnet. Data will be delivered in real-time from clinics, electronic health records and patients themselves.
“This will be one of the biggest changes to ever occur in clinical research,” Del Beccaro said. “And Children’s will be at the table when it happens.”
The new network is modeled after ImproveCareNow – an existing health network dedicated to helping children with inflammatory bowel disease. Patients with IBD have voluntarily shared medical information on the network website and the vast collection of patient data has led to improved remission rates.
Derek Streat has a daughter who is treated at Children’s and helped the research institute apply for the PCORI grant in hopes that the project would lead to improved patient care. His 6-year-old daughter had a kidney transplant at Children’s in 2010. Since then, he has been searching for alternatives to standard anti-rejection medications.
“The medications are effective in keeping her organ healthy in the short term, but they could harm her in the long term,” Streat said.
Once PCORnet is established, Streat expects he will be able to find data on other treatment regimens and learn which are most successful.
“This will have a direct impact on my daughter’s care, but it has implications across any disease,” Streat said. “Every kid with a serious illness will benefit from it.”
Helping research move faster
Accessing medical data from an outside hospital can be difficult for researchers because each institution has a different permissions process and medical records have no common language or standard codes.
“Imagine if everyone had their own telephone network so no one could talk to each other without special permission for each call. That’s what researchers face trying to find data from outside sources,” Del Beccaro said.
But PCORnet will continuously pool medical data from across the country, giving researchers access to many more patients. During the next 18 months, developers will create a mechanism to translate all medical data into a common language.
For researchers at Children’s who want to start clinical trials to treat rare conditions, this network can help them find children to enroll more quickly.
“Instead of going through years of work to get enough patients, this infrastructure will speed up the process,” Del Beccaro said.
Improving patient outcomes
The new network aims to improve patient health and survival. When researchers can conduct faster comparative research across large groups, their conclusions will be more reliable.
For example, with easier access to patient data, a researcher can quickly compare a large group of diabetic children on one therapy to a large group on another treatment and more accurately determine which is better.
“When you know how 100 kids with this rare disease were treated, versus how just 10 were, you can make quicker changes in treatment, improving outcomes,” Del Beccaro said.
Once effective treatments are discovered, word will spread quickly through PCORnet to benefit patients with both common diseases like asthma or obesity as well those with rare diseases.
Getting patients involved in research
Patients will be highly involved in the development of PCORnet. The network will allow patients and their families to submit medical data, support specific research projects and sign up for studies.
Despite the vast information that will be available on PCORnet, the network will be designed to protect patient privacy and safety.
- Seattle Children’s Research Institute
- Seattle Children’s Transplant Center
- Patient-Centered Outcomes Research Institute
- National Patient-Centered Outcomes Research Network
If you’d like to arrange an interview with Dr. Mark Del Beccaro, please contact Children’s PR team at 206-987-4500 or firstname.lastname@example.org.