Researchers are Listening for Your Voice!

You have often heard us say, “Your greatest contribution to the Foundation is your Voice!” This continues to hold true as we introduce our new partnership with My PATH Story Booth!

What is Story Booth?
The University of Pittsburgh and their collaborators are conducting a research study and want to know about patients’ experiences with health and illness. By sharing these stories with researchers, the hope is to focus research on topics that are of importance to patients and likely to improve health and health care. Using MyPaTH Story Booth, patients/caregivers can record a conversation to share with researchers. Let them know what it’s like to live with FPIES, what you would like health care professionals to know when they care for someone with a diagnosis of FPIES, or how the health care system could have improved your experience(s)! To learn more about the background of Story Booth and to listen to patient stories related to other medical conditions, be sure to check out their website!

So, how does it work?
Happily, the process is streamlined and easy! The first step is simply to make a phone call or send an email (see information at the end of this post) to set up your phone conversation. When you are scheduling your conversation, think of a space of about an hour that you can devote to the call, without distractions (I know– this distraction-less part isn’t always so simple!).

Once the day of your conversation arrives, you will have the research described to you and be asked for your informed consent, demonstrating that you understand what the study is about and that you consent to share the information you provide in your story. It might be helpful to jot down a few ideas you may have about the aspects of your family’s FPIES journey that you most want to share. These stories will be recorded and then added to the database of stories on the study’s website, so you will want to be sure to leave out any identifying information regarding yourself, your family members/children, and hospitals/clinics/medical staff. If you do accidentally say something that could be considered identifiable during the recording, don’t worry—the identifying information will be “beeped” out before your story is shared with researchers.

Who can share a story?
In order to share your story at this time, you need to be able to speak and understand English, and you must be at least 18 years old. Participants can be adults who are living with FPIES themselves, adults who are caregivers of a child living with FPIES, or even practitioners who have experience managing the medical care of those affected by FPIES. Even though this study is being conducted by groups in the United States, you can still participate if you live in another country, as long as you meet the aforementioned criteria regarding age, language, and the ability to engage in the conversation via the provided phone number.

Since many of us in the FPIES community are caregivers of individuals affected by FPIES (i.e. our kiddos!), we would be sharing our stories through the lens of a caregiver. That said, a lot of our older kids have strong opinions about their experiences with FPIES—I know mine do!—so if they have something they would like to share, they can tell it to their caregiver before the phone call and then the caregiver can relay the information during his/her recorded conversation. We want our children’s voices to be heard as well!

For adults living with FPIES, this is really a great opportunity to share your own first-hand experiences and to give information about how living with FPIES as an adult impacts your daily life and/or medical care.

How do I decide what to share?
Talking about our experiences with FPIES can feel overwhelming at times and it might be tricky to narrow down what you most want to say. Everyone’s experiences are unique and often quite multidimensional! Happily, My PaTH Story Booth has provided a list of prompts (check out the chart below!) that can help guide the conversation. Of course, this list does not limit your conversation—please feel free to talk about the aspects of living with FPIES that you feel are most impactful and that researchers most need to hear.