The Patient Perspective with Jenn Ortiz
Jenn Ortiz is a two-time brain tumor survivor and a Patient Advocate with the End Brain Cancer Initiative (EBCI). She shared her perspective as a patient who participated in the Patient Reported Outcomes for Patients with Recurrent GBM (PRO’s rGBM) Study for patients with an initial Glioblastoma recurrence.
The first step was pre-qualification with EBCI. Jenn said “the qualification process was enjoyable while also educational for me. I felt EBCI was sensitive and respectful as we navigated the interview… I was well prepared and EBCI made sure my caregiver and I were well informed.”
This was followed by a joint 45-minute interview with Jenn and her caregiver/husband Matt, as well as a 10-minute post-interview online caregiver survey. “It was very simple. I answered demographic and diagnosis questions. The questions did not feel invasive or uncomfortable,” said Jenn of the interview. “I feel the process was sensitive to my diagnosis and staff walked me through the process and what to expect.”
Jenn encourages other rGBM patients/caregivers participate in this study. “I am a firm believer in data and information to help make changes for our future and health. Sharing patient and caregiver experiences helps future patients, doctors, and pharmaceutical companies.”
Patients who participate in the PRO's rGBM Study will be paid $100 and caregivers will be paid an additional $50 to share their voice and experience in interviews.
Hear Jenn Ortiz's Story
Click to watch Jenn's interview with AZ Family.
Are you or a loved one living with GLIOBLASTOMA (GBM)?
Have you experienced a recurrence (rGBM)?
One joint 45-minute interview can be scheduled at your convenience, typically within business hours. Participating caregivers will also be asked to complete a survey after the interview.
Eligible individuals with recurrent GBM and caregivers who complete the joint interview will receive one $100 Visa gift card.
Caregivers will receive one $50 Visa gift card for completing the survey.