Like many with inflammatory bowel diseases (IBD), I’ve had to endure emergency room visits, hospitalizations, surgeries, medication changes and abdominal pain on a regular basis since I was diagnosed with Crohn’s disease 12 years ago. Because of these experiences, I understand firsthand the importance of quality in the treatment of IBD.

Lack of access to care

I also know that I’m actually one of the lucky ones. I have had good health insurance, a supportive family and some of the best doctors in the world. However, not all are as lucky as I have been. I have met patients whose care providers never took the time to think through their needs thoroughly or paid attention to their emotional state. The unfortunate reality is that the quality of IBD care varies greatly across the country.

“The only way to truly improve quality of care for IBD patients is to give them a seat at the table, working with health care providers.”

The only way to truly improve quality of care for IBD patients is to give them a seat at the table, working with health care providers. If you were to convene a group of physicians in a room to discuss IBD treatment, I imagine the results would be good but the group could potentially miss some of the core issues plaguing patients. If you convene a group of patients in a room, the group might come up with solutions that wouldn’t work clinically. Only by working together are we able to come up with the best solutions and continue developing techniques to improve quality of care for all patients living with IBD.

Reflecting patient needs

Many health organizations are now involving the patient voice in their care initiatives. As patient leaders, we have the opportunity to work with prominent IBD physicians and researchers around the country to discuss quality of care issues and how these issues can be addressed to create standards of care that can be implemented. This allows us to voice our opinions and provide feedback from the patient perspective, which is integral to the success of the program.

Helping to standardize and improve care for everyone is crucial. Improving the quality of care for IBD patients won’t cure Crohn’s disease or ulcerative colitis. However, it can go a long way to improving the quality of life for other IBD patients like me and helping to address the issues that are most important to us.