Research is crucial to helping us further our understanding about hydrocephalus and to identify ways to prevent or cure the condition. That’s why we’re partnering with the Patient-Centered Outcomes Research Institute (PCORI) and the University of Pittsburgh on their MyPaTH Story Booth Project. The project aims to help researchers better understand the hydrocephalus patient experience.
The MyPaTH Story Booth Project is a research study currently being conducted to create an archive of the patient, caregiver, and research participant stories that researchers can use to better understand people’s experiences with health, illness, coping, and the healthcare system. Researchers hope their findings will lead to the development of research studies that address topics that are important to patients and caregivers.
To increase hydrocephalus voices in the project, the MyPaTH Story Booth Project is currently looking for patients and caregivers who would like to share their hydrocephalus story. The stories are collected over the phone during a 45-minute interview. In addition to raising awareness about how hydrocephalus impacts patients and caregivers, the Story Booth facilitates connections between people who have real-world experience living with a health condition and health researchers, ultimately helping researchers and doctors devise studies and treatments that are centered on the patient. After the recordings are edited to remove any identifying information, they are then shared with researchers and posted online (if you consent) on the MyPaTH website.
Why should you share your story?
- To educate researchers, medical providers and others about what it’s like to live with hydrocephalus or care for someone with the condition.
- To inspire research projects that try to improve the way health care is delivered.
How to participate: If you’re interested in sharing your story, you can contact the story booth team at firstname.lastname@example.org. Be sure to let them know that you are part of the Hydrocephalus Association community!
For more information, visit the study website.