How Parents and Patients Can Make A Difference in Obesity
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To help mark National Nutrition Month®, we spoke to Douglas Lunsford, a champion of obesity research, about how his experience as a dedicated parent concerned about his son’s weight led him to become an investigator for a PCORI-supported research team.
From 2012 to 2015, Lunsford and his son participated in a healthy weight program at Nationwide Children’s Hospital in Columbus, Ohio, which is a part of PEDSnet, one of the Clinical Data Research Networks (CDRNs) that are part of PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is the PCORI-funded initiative designed to build partnerships and harness health data to improve the nation’s ability to conduct critical clinical research.
While involved in the healthy weight program, Lunsford developed relationships with patients, other parents, caregivers, and clinicians. As a result, a pediatrician asked him to provide input on a research proposal for the Healthy Weight Network. He is now the Lead Parent Principal Investigator for the PCORnet Obesity Observational Study, which is examining the short- and long-term effects of antibiotics on childhood growth.
New information about how gut bacteria use energy has raised concerns about the possible links between the use of antibiotics in early infancy and childhood obesity. PCORnet will be used to conduct a large observational study to assess the effects of different types, timing, and amounts of antibiotic use in the first two years of life.
The study will analyze growth trajectories to age 5, and body mass index (BMI) and obesity at ages 5 and 10. It will use de-identified data from the electronic medical records of about 600,000 children from 42 healthcare systems within 10 Clinical Data Research Networks across the United States. An important secondary aim of the study is to explore how best to communicate the findings to parents and clinicians to affect clinical practice.
What do you hope to accomplish through your work with PCORnet obesity study?
We want to establish the degree of risk of childhood obesity from use of antibiotics in children ages 0–2. But I also want to identify what makes it difficult for parents to be involved in research and figure out how to overcome those barriers. For example, medical professionals use so many acronyms that it’s hard to understand what they mean. I helped the study team create a glossary of acronyms, and that will help others become a part of the conversation.
Why should parents and other family members be involved in research?
A parent, patient, or caregiver may have an entirely different perspective about a disease than a researcher, and it may be one that the researcher has never considered. We know our children, and we should share our knowledge.
On a personal level, my involvement in this project is one of the most rewarding things I’ve ever done in my life. This research has the potential to improve the lives of thousands, if not millions, of people. That is staggering to me. Who wouldn’t want to be a part of a project to help with a problem that you or your children have dealt with?
If I can find a way to help a family, even if it is just one, avoid dealing with the problems with obesity that my son has faced, then that’s more reward than I could ever hope for. Children who have obesity can suffer from bullying, depression, and marginalization, and obesity can have negative impacts on their long-term health. This research could give someone a life where he or she didn’t have to deal with any of those issues. How great is that?
Why is it important to share personal health information for a study like this?
It is easier to identify real trends and common elements if you have data. To protect the privacy of the children, the PCORnet data will be stripped of information that could be used to identify an individual and combined into results from across thousands of patient records. No identifiable data are sent to researchers. While there is always some level of risk in data sharing, to me the pros far outweigh and cons.
We’re going to look at data from the records of roughly 600,000 patients to understand the link between antibiotics and obesity. The data we get will come from children across the country and will help parents understand the risks of antibiotic use in early childhood so they can make informed decisions. The data will help us find answers and possibly improve the lives of countless children.
How would you encourage patients, parents, and caregivers to participate in the research process?
If you have an idea, don’t be afraid to throw it to your doctor or send it up the chain to another expert in the field. Do some research, identify questions, and pursue them. Once you and other stakeholders become comfortable with each other, you can have an open dialogue and work together to find solutions to the problem that concerns you. At first, you won’t always know the answers—you might not even know the questions—but you’ll be on the path to finding a solution.
