Carol earned her nursing degree from the University of Delaware. She earned Masters and Doctoral degrees in Nursing from the University of Virginia. She discovered during 15 years of gastroenterology nursing that her greatest professional passion is to help people with inflammatory bowel disease – the disease with which she has lived since 1977.
Everybody with Crohn’s disease (CD) is a researcher. We research privately, because CD isolates us with symptoms too “impolite” to talk about. We quietly think, “If I avoid ‘these’ foods, maybe my diarrhea will stop. Or, if I take ‘this’ supplement, maybe eating won’t double me over in pain.” We work alone, alone, alone, often for a lifetime.
The Crohn’s and Colitis Foundation of America launched CCFA Partners to create a mechanism where patients could partner with investigators to address questions pertinent to everyday life with inflammatory bowel disease; CCFA Partners is one of the 33 individual networks that form PCORnet, the National Patient-Centered Clinical Research Network.
CCFA Partners is a major opportunity for people with Crohn’s disease to work together as a team both with each other and with scientific leaders. We’re no longer limited to working alone or even in small groups. Instead, online research surveys turn our personal experiences into big, analyzable data. Together, we help researchers shed light on important connections between health behaviors and CD symptoms through formal research.
“What should I eat?” is the big question on our minds.
As Co-Principal Investigator for the research study known as DINE-CD (Comparative Effectiveness of Specific Carbohydrate and Mediterranean Diets to Induce Remission in Patients with Crohn’s Disease– a PCORI-funded Demonstration Study) a randomized, multicenter trial designed to compare the effects of two diets on disease activity in CD, I’m excited about this ‘next natural step’ in my lifetime of experimenting with the effects of food on CD symptoms. It’s an opportunity not possible before CCFA Partners and PCORnet.
I’m acutely aware of the importance of CD diet research. I’ve maintained a 35-year remission of CD through diet alone; thus, I know food can heal gut inflammation and promote gut health for me. However, 15 years of gastroenterology nursing and 10 years conducting Crohn’s disease research taught me that larger clinical studies will be needed before CD diet recommendations can become standard practice.
Before involvement with CCFA Partners, I conducted CD diet studies that were exciting steps forward. However, my small studies couldn’t capture as much far-reaching attention as would a drop in an ocean.
Then I partnered with CCFA Partners researchers. (Watch this video about CCFA Partners.)
The size of the CCFA Partners database (>14,000 participants) and the expertise of the CCFA Partners researchers catapulted my research to another level. My latest article entitled, “Avoidance of Fiber Is Associated with Greater Risk of Crohn’s Disease Flare in a 6-Month Period” has been cited in scientific journals and reached the top 5% of all research outputs scored by Altmetric.
All of this led to the opportunity to transition into my current role as patient representative on the DINE-CD clinical study. It was my pleasure and privilege to participate as a ‘patient’ in the CCFA Partners research question development – proposing a CD research question of my own, and then watching the various diet-focused questions rise as ‘patients’ voted. The process culminated in conceptualization of the DINE-CD study.
Being a patient representative invigorates me. I meet monthly with a high-caliber group charged with considering and adopting solutions to various design issues that inevitably arise during project planning. I also collaborate with a small dedicated workgroup charged with developing the materials needed to help participants understand and complete the study protocol.
Our workgroup members spanned three states, and we used telephone conferences and Webex to coordinate our efforts. Over a period of months, we produced all the necessary educational documents:
- Descriptions of the two diets, to be used for screening purposes
- ‘Welcome’ video script
- ‘Tips for Following the Diet Away from Home’ video scripts (one per diet)
- ‘Tips for Following the Diet During Weeks 7-12’ video scripts (one per diet)
- ‘Frequently Asked Questions” with answers (one per diet)
- ‘Permitted and Not-Permitted Foods’ lists (one per diet)
We each drafted one or two documents, then we all edited each document. Diligent work produced accurate, clear, and user-friendly materials. I loved being part of this group that demonstrated great attention to detail and commitment to excellence throughout the process.
I first learned about the Patient-Centered Outcomes Research Institute (PCORI) years ago, at the National State of the Science, Congress on Nursing Research. There I heard about PCORI’s intention to fund research that incorporates patients into every stage of the investigation, from conception to completion. Not in my wildest dream could I foresee back then the powerful way PCORI-funded research would eventually produce great opportunities for a person like me – someone who is passionate about sacrificing time and effort to help individuals with CD find personal peace with food.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.