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Compassion in Community

Compassion in Community

FromGlioblastoma aka GBM


Compassion in Community

FromGlioblastoma aka GBM

ratings:
Length:
41 minutes
Released:
Aug 18, 2022
Format:
Podcast episode

Description

“We really imagine this place at the fundamental level as an online sanctuary… you're guided by both medical experts and by other people that you know have been there and want to pay it forward.” Vikram Bhaskaran and Rohan Ramakrishna saw the online healthcare experience and politely said “thanks but no thanks.” Troubled by the lack of information and support for glioblastoma patients and caregivers, they created Roon, a platform that is re-imagining medical content and health communities. Vikram and Rohan join Amber Barbach on Glioblastoma aka GBM to discuss Roon, its mission, and how it’s changing the game for navigating glioblastoma.

Hear us talk about:

Roon. Roon is a medical Q&A platform patients and caregivers navigating glioblastoma can visit to find information, community, and support. Driven by a multidisciplinary team of doctors, patients and caregivers, Roon gathers them all in one place to make a patient’s and caregiver’s experience much easier. There are questions only doctors can answer, but patients and caregivers, having lived the experience of the disease, also share helpful insights and suggestions about the non-medical aspects of navigating glioblastoma.

Roon’s down-to-earth approach to disseminating information. Medical professionals often say not to go to Google when you leave the clinic as people come back more overwhelmed and misinformed, but where else are patients and caregivers supposed to access information? Even so, Google and all the medical websites it shows aren’t particularly helpful when it comes to glioblastoma. Roon aims to correct that with its easy to use features and its interdisciplinary team of glioblastoma experts.

Dividing the experience. Content is typically shared for both caregivers and patients who use Roon, unless specifically directed at either group - for example, only caregivers have access to Roon’s Caregiver Resource. There are subtle differences in the ways caregivers and patients are addressed individually, because the people at Roon understand that everyone’s experience is fully different. They curate a place for everyone’s particular situation.

Creating a new experience. “[Our team is] really tired of the internet as being a source of disinformation and misinformation,” Rohan shares. “They’re really excited about creating a new online healthcare experience where they can foundationally be a part of it.” They are personally handcrafting content because they want the experience for patients and families to be different from what it currently is, he adds. 

Moving forward. Vikram and Rohan plan for Roon to grow beyond the small community it is today. Imagine a world where, after receiving a glioblastoma diagnosis, your doctor directs you to Roon, where every GBM expert in the world is sharing information - that’s the world they want to create. They hope to make it even more accessible by going global and translating the platform into several different languages. 


What’s Next?
Rohan Ramakrishna is co-founder of Roon, Chief of Neurological Surgery, and Associate Professor of Neurological Surgery at Weill Cornell Medicine. Vikram Bhaskaran is co-founder and CEO of Roon, board member at the Museum of Food and Drink, and former Head of Partnerships, Creators and Content at Pinterest. Their current goal is to grow the community of experts at Roon.

As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.

Resources
Rohan Ramakrishna on LinkedIn
Vikram Bhaskaran on LinkedIn
Roon
Released:
Aug 18, 2022
Format:
Podcast episode

Titles in the series (39)

Glioblastoma aka GBM is a podcast by the Glioblastoma Research Organization that will highlight the stories of our community, from Glioblastoma Warriors, to caregivers, medical advisors, and more. Glioblastoma aka GBM is hosted by Amber Barbach, who founded the Glioblastoma Research Organization in 2018, after her father was diagnosed with and passed away from Glioblastoma. This podcast is an exploration of stories and personal experiences, and is not meant to be taken as medical advice of any kind. If you have questions, always consult with your own medical providers and healthcare team. You are warmly invited to connect with the team at the Glioblastoma Research Organization, and share your own stories and experiences. For more information, please visit gbmresearch.org.