Childhood obesity in the United States is estimated by the Centers for Disease Control and Prevention to be prevalent among 17% of children and teenagers between the ages of 2 and 19. This alarming statistic not only translates to 12.7 million children and adolescents, but also affects their families that struggle with supporting their children in achieving and sustaining a healthy weight. Obese children and teens also are at a higher risk of psychosocial issues and cardiovascular problems such as high blood pressure and cholesterol. Obesity among children and adults is estimated to account for 10% of medical spending in the United States, approximately $147 billion per year. The magnitude of this problem highlights the urgent need for national collaboration of multiple stakeholders to address this issue.
In December 2013, the Patient Centered Outcomes Research Institute (PCORI) awarded 12 Clinical Data Research Network (CDRN) contracts, as part of the development of the national PCORNet program to build a “network of networks” devoted to creating a national clinical research infrastructure. Obesity is a research priority for PCORI. The Healthy Weight Network was created under the award to PEDSnet, comprised of a consortium of 8 children’s hospitals: Children’s Hospital of Philadelphia (PI, Forrest), Boston Children’s Hospital, Cincinnati Children’s Hospital Medical Center (co-PI, Margolis), Colorado Children’s Hospital, Nemours Children’s Hospital, Nationwide Children’s Hospital, St. Louis Children’s Hospital, and Seattle Children’s Hospital.
The purpose of PEDSnet-CDRN is to create a national, pediatric-specific learning health system (LHS). The LHS model unites patients, family members, clinicians and researchers together to work together towards common aims, generate new knowledge through research, and improve clinical care through rapid implementation of new evidence. This has included creation of a digital infrastructure of standardized data elements from the EHR of the eight children’s hospitals, which includes data elements that describe patient health and healthcare utilization.
Participants will also come from Scalable Collaborative Infrastructure for a Learning Health System (SCILHS) CDRN. Of the other 11 CDRNs recently funded by the Patient-Centered Outcomes Research Institute (PCORI), SCILHS was awarded this opportunity as well. SCILHS is an informatics infrastructure system working to cover more than 8 million patients and enable clinician and patient participation in research. PEDSnet partnering with SCILHS will help expand the study to include participants from the following SCILHS sites: Massachusetts General Hospital, Wake Forest Baptist Medical Center, and Boston Medical Center.
The Healthy Weight Network will engage patients, family members, and caregivers in gathering sufficient data about childhood obesity, generating new knowledge and research, and working together to improve the quality of care. As part of this PCORI award, the Healthy Weight Network needs to demonstrate the ability to collect patient reported outcomes and document whether patients are willing to be contacted about participation in future research projects.
The purpose of the study is to:
1) demonstrate the viability of this clinic consortium to feasibly survey a large proportion of the patient population
2) demonstrate ability to link survey responses to the PEDSnet database of measures derived from patient electronic health records (EHR);
3) use patient/parent reported outcomes to learn about the health and well-being of these patients, including family involvement;
4) understand how patients may want to be involved in future research;
5) document willingness to be contacted for future research; and
6) describe the association between patient/parent reported outcomes and EHR-derived measures of patient health burden and healthcare utilization.
We hypothesize that at least 50% of the patient population surveyed will show interest in being contacted for future research opportunities. Secondarily, we hypothesize that patients with a greater obesity-related health burden and a higher frequency of healthcare utilization will report lower levels of global health and family involvement.