Interview with NBC Nightly News: The COLONTOWN CLINIC
SCHEDULED FOR FRIDAY (12/23) – NBC NATIONAL NIGHTLY NEWS with Lester Holt!
NBC Nightly News recently interviewed both I and a patient/caregiver couple helped by the COLONTOWN CLINIC, a project supported by the Colon Cancer Alliance. The interview and story will air this ????? night.
As many of you know, I am proud to work on numerous patient Clinical Trial advocacy efforts with a number of advocacy organizations to try to empower & educate CRC patients on Clinical Trials, so that they can subsequently have better informed and more empowered discussions with their medical teams for medical advice.
A MAJOR effort along these lines over the past year is the COLONTOWN CLINIC which was recently written up in STAT News:
There is a lot of CRC Clinical Trial information on the web but it is very diffuse and spread around between various websites. In contrast, the COLONTOWN CLINIC is intended to be a centralized, private and supportive community website that (as I see it):
1.) Levels the playing field so that all CRC member patients/caregivers can hear the latest news on CRC clinical trials at the same time – no matter if they are being treated at a world famous cancer center or by a local oncologist. Having witnessed my own mother’s interaction with a small town oncologist re: clinical trials, this information democratization is VERY important to me.
2.) Because oncology drug discovery research is currently moving so fast and because frankly Stage IV patient prognosis timelines may be short – it provides these updates in as close to REAL TIME (24/7) as possible unlike the standard model of patients having to wait at times months (if ever) to hear about the latest trial openings or trial data – delays which especially in the era of immunotherapy research, could in theory have life or death consequences.
All of this is done in a private, supportive community setting with a number of PhD scientist members helping to explain things in layperson terms.
I believe this project is changing people’s lives. I believe it will impact the system, especially because I don’t think there is anything CRC-specific about the concept. It could be done with any cancer type and probably other disease areas as well.
As the creator and founding mayor of COLONTOWN Erika Hanson Brown says “[it shows] the world that people – working together in community – can make a world of difference for people as we confront this beast called cancer“.
I am happy and excited that NBC News has decided to focus on our project and I look forward to seeing the story on NBC Nightly News!
EDIT ADDED: Here is an online link to the new story video – I don’t know for how long it will be active but it is tonight! http://www.nbcnews.com/nightly-news/video/online-community-for-colon-cancer-patients-empowering-many-840655427940
EDIT ADDED: Here is an online link to a companion written news story published on the MSNBC homepage on January 2, 2017: http://www.nbcnews.com/health/cancer/colon-cancer-patients-seek-latest-treatments-through-social-media-n700591