One of the fundamental goals at the Osteosarcoma Institute is to remove obstacles so that osteosarcoma patients and their families can have access to advanced treatment and innovative care as quickly as possible. OSI Connect (formerly OSI Hotline) was created to expand awareness and reach more people in need of support—wherever they might live—and provide a myriad of osteosarcoma resources.
“We have created a resource available to patients, their families and physicians around the world,” says OSI Director Lee Helman, MD. “With this service, we are able to discuss general strategies for treatment, as well as available local resources for care relevant to a specific patient with osteosarcoma.”
Launched in April 2019, OSI Connect is dedicated to supporting those impacted by osteosarcoma and is available to anyone, anywhere in the world. It is a free, reliable resource that connects patients, families and caregivers with knowledgeable osteosarcoma experts to answer questions about various aspects of the disease. OSI Connect physicians can discuss available treatments, possible side effects and provide advice for getting the most out of your visits with your treating physician.
A short intake form—which gathers details like date of diagnosis, treatment status and any initial questions the patient and/or family may have—is all that is initially needed to get the process started. This information is then sent directly to Chelsey Blanks, the OSI Connect Administrator, who coordinates a 20-to-40-minute phone call with the patient, family and/or caregiver, and the OSI Connect physician. After the call, Chelsey is able to send a quick recap of the call upon request to the patient and family, with notes, helpful resources and/or links to additional information.
Dr. Helman himself joins nearly all of the calls. For Spanish-speaking patients, Alejandro Sweet-Cordero, MD, also volunteers his time.
“The amount of compassion and care, the time, dignity and kindness that Dr. Helman and Dr. Sweet-Cordero personally dedicate to this initiative is absolutely incredible,” says Chelsey, who notes that they often will schedule follow-up calls with families 3 to 9 months after the first call, if needed. Chelsey and Dr. Helman agree, “No one is taking too much time, and nothing is too small to discuss.”
A Vital Pipeline
According to Chelsey, OSI Connect has become a kind of pipeline between OSI and patients. And the feedback has only been positive.
“There have been times when, if someone might be eligible for a clinical trial that the OSI supports, we connect them directly to the principal investigator of that study,” she says. “Other times, we are there to offer support, answer any questions they have and point them toward resources in their area.”
“We are so grateful to OSI Connect for their sense of urgency in supporting us,” says Lei Z, mother of osteosarcoma patient Jaden. “OSI Connect has always been my valuable resource.”
Since it was created, the number of calls each year has tripled, with calls coming from all over the globe including Brazil, Cuba, Denmark, India, the United Kingdom and the Philippines. In 2021, OSI Connect received 46 patient calls, and OSI’s aim is to raise more awareness in the coming year to reach even more people in need.
“These families are on a hunt for knowledge,” says Chelsey. “OSI Connect allows us to meet people right where they are. We just want to help as many patients and families as possible in the midst of something so difficult. This is one of the most impactful things I’ve probably ever been a part of.”
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