Ashlee’s OB-GYN was well intentioned when she discouraged searching the internet for information on congenital diaphragmatic hernia (CDH). The internet has tons of scary, often misleading or incorrect information about medical conditions.
Clinical practitioners often caution patients and families against falling prey to “Dr. Google.”
But what is a family to do when they want to research a medical condition to supplement information from their provider?
“As a nurse, I believe in the power of education,” Ashlee says. “I needed to know what our diagnosis was, and what our future looked like. Honestly, the things Google tells you are so sad and besides telling us that only 50% of babies survive, it was less than helpful.”
Ashlee’s medical training helped her evaluate the information she encountered and find treatment that far exceeds national benchmarks, but here are four tips for anyone seeking reliable information about child’s medical conditions:
1. Seek authoritative, free consumer health resources
Pat Clark, M.L.S., director of the Medical Library & Family Resource Center Library at Johns Hopkins All Children’s Hospital, points parents toward a list of sites that have reliable information about children’s health and medical conditions:
The National Institutes of Health National Network of Libraries of Medicine offers tips on evaluating the reliability of websites, including for accuracy, authority, bias/objectivity, currency/timeliness and completeness.
2. Talk to trusted medical professionals
Lisa’s son Sam is treated for cystic fibrosis at Johns Hopkins All Children’s. When an opportunity to participate in a clinical trial came along, Lisa talked extensively with the CF Center team, and they recommended reliable outside sources to educate her about the risks and benefits of participation. “The CF team at All Children’s is a wealth of information,” Lisa says.
3. Find reputable organizations
Many medical conditions have national organizations that specialize in that condition, such as the Cystic Fibrosis Foundation, the American Diabetes Association or the American Cancer Society. Ashlee found a group dedicated to CDH that helped her learn about the condition.
“They offered education, stories of hope and what I found most helpful was the list of questions to ask potential physicians,” says Ashlee, who traveled from Michigan to St. Petersburg, Florida, for her daughter to have CDH treatment at Johns Hopkins All Children’s. “Not everyone has to relocate to receive quality CDH care because they are near experienced CDH hospitals, but even if they don’t have to relocate, these are still questions that should be asked so you know what your physician can and cannot do.”
4. Talk with other families
Often medical professionals or reputable organizations can recommend families who have children with similar conditions and are willing to share their knowledge and experience.
“Talk to parents who have already been through the stage that your child is currently going through, or ask the Clinical Research team if there is a parent that would be willing to share their family’s experience with you in going through the same clinical trial,” Lisa says.
Ashlee agrees that other families can be a fantastic resource.
“Everyone’s CDH experience can be so different,” she says, “but being able to reach out to people at certain points in pregnancy (and after birth) and ask them if anyone had been in a similar situation, gave us so much more information than any website ever could.”
Whether information comes from a website, a reputable organization or other families, it’s wise to seek context in a discussion with your trusted medical professional.
“Overall, with any difficult diagnosis, research is a good thing,” Ashlee says. “Being educated is a good thing. And while you may find some doom and gloom about things, you have to keep looking until you find hope.”