In cystic fibrosis care, we follow a “Care Team” model because of the complexities of the disease and disease management. While care does vary from center to center, at most appointments we see a pulmonologist, a dietician, a respiratory therapist and a social worker. Depending on the current care needs, we also have the opportunity to meet with a psychologist, a gastroenterologist, an endocrinologist and others. These appointments can last for hours.
In addition to this group of folks that come together to meet with us quarterly at check-up appointments, many teams also have research coordinators working with them. These are the people who will come into our room at some point during that long clinic visit to share with us a specific opportunity to participate in some kind of research. The timing of their visit is highly variable, based on the following considerations:
- Are there research opportunities that you’re eligible for that they’re aware of?
- Are the researchers available to see you during the time of your visit?
- Are they prioritized by you and the care team as yet another someone to talk to during your long stay in that small clinic room?
On top of this, add a highly tense and often emotional visit filled with test results and difficult conversations that inevitably set the tone and change the mood, affecting your perception of a “good” visit and all that it entails. My perception of the people who come into the room are shaped by my knowledge of them prior to my visit, the experiences of that day, and the behavior modeled by the care team members who either welcome or dismiss the research coordinator when they knock on the door, subconsciously prioritizing what they are offering to the patient over the importance of what the research coordinator brings.
In this post from the summit at the White House, I shared some of the “How Might We” questions that emerged from the wonderful discussions around how to involve research participants as partners, but I think that we might need to start simpler.
How might we bring a trusted awareness to change the perception of clinical research?
What if the doctor, my trusted partner, could share those opportunities for research participation with me rather than a stranger who, after knocking on the door to my clinic room, is asked to come back later?
Or what if the doctor invited them in, staying with me and demonstrating for me her belief in the importance of participation in a particular study, helping me to make this decision as a trusted partner in managing my health?
What if it was easier for research opportunities and individuals to intersect so that I didn’t have to search for opportunities?
What if, like Amazon, when I found a trial that I was interested in, I could read reviews by my peers, and was given suggestions for other opportunities that I might like?
What if I could talk to other people like me who were participating in the trial, in a safe and structured space with guidelines to follow so as to not compromise the integrity of the research?
What if I could understand holistically what participation meant – how it might affect me, my family, my health – without having to read through a highly clinical informed consent?
I’m trying to learn more about the different ways folks become aware of clinical trials and efforts to improve that awareness and subsequent participation. Clinical trials are critical to the development of new knowledge, new treatments and the survival of many, including my son. One of the main reasons that we haven’t participated in much research to date is because pediatric research is often limited to kids over age six. Since my son turned six just this past March, I hope to find different opportunities for participation for him and for other kids like him.
Sites like Why Clinical Trials Matter or Time Equals Lives help to make research participation relevant and easy to understand, while places like Lilly TrialGuide allow me to find relevant trials and help to explain the specifics of the process of participation.
I'm interested in learning how you, the reader, gained awareness of trials that you have been a part of as well as ideas that you might have for raising this awareness with others. Drop us a line on Twitter at @LillyTrials or better yet, share your story in the comments. After all, storytelling is the most powerful way to put ideas out into the world!