A Serendipitous Connection Helps Improve Patient Communications and Outreach

August 24, 2020, by NCI-CONNECT Staff

What do a creative social media campaign, blog article, and web-based educational tool have in common? NCI-CONNECT Communications Editor Kristin Odom. From graphic design to strategic planning, Odom’s communications and outreach work is helping expand NCI-CONNECT to reach adults with rare brain or spine tumors. 

In collaboration with Odom, NCI-CONNECT Program Manger Brittany Cordeiro is developing partnerships with non-profit organizations who share a common concern for improving the outcomes of these patients through awareness and education.

“I feel a bond with the community. Connecting with patients and caregivers by email, direct messages, or phone calls gives me purpose,” Odom shares. It also inspires her career, which started after graduating from Louisiana Tech University in 2003 with a Bachelor of Arts in graphic design. She was working as a newspaper manager in Louisiana when her identical twin sister was diagnosed with a rare cancer the day before their 30th birthday.

Odom moved to Houston to help care for her sister, who passed three months later on November 3, 2011. Odom knew then that she wanted to help the cancer community. She accepted a communications job at The University of Texas MD Anderson Cancer Center. There, she met Cordeiro, who was in a communications job in neuro-oncology and neurosurgery.

Cordeiro graduated from Southwestern University in Georgetown, Texas in 2005 with a Bachelor of Arts in communications. She was an online editor for an astute science and technology magazine in Boston for over six years before returning to her Houston roots in 2011 to work at MD Anderson.  

Odom joined the NCI Center for Cancer Research's Neuro-Oncology Branch in August 2016, and Cordeiro followed in January 2018 at the initiation of NCI-CONNECT. Together, they have been improving patient education and raising awareness for adults with rare brain and spine tumors by providing online resources and developing an advocacy network.  

“Being surrounded by doctors and researchers who are helping end cancer is truly remarkable and exciting, because we get to share their work with the public and our partners,” Cordeiro says.

Advancing Patient Education

The NCI-CONNECT website is a go-to resource for people with rare brain and spine cancers. In particular, NCI-CONNECT focuses on 12 rare tumor types, each with less than 2,000 people diagnosed a year in the United States. Recognizing that the rarity of these tumors means there is limited educational information, Odom led the development of a website that included tumor type webpages.

These educational webpages help patients understand grading and causes of tumors, symptoms, treatments, available clinical studies and trials, and uniquely, what tumors look like on a magnetic resonance imaging (MRI) scan. They are also filled with creative media content, including infographics and videos. Such creative content spans the website.

The NCI-CONNECT Clinical Studies page includes short videos explaining the trials, along with printable information sheets. The website’s Living with a Tumor section focuses on cancer’s impact on a person’s life and provides resources for coping at every stage of disease. This information is further enhanced by the Managing Your Self-Care subsection. 

“Unfortunately, I know how cancer can affect a person and their loved ones,” Odom says. She is now also a cancer caretaker for her husband, who was diagnosed with colorectal cancer in May 2017. Her personal experience—paired with her design and creative skills—provides unique insight. It helped lead to the development of a private Facebook group specifically for people with rare brain and spine tumors, called NCI-CONNECT Community.

Odom also manages NCI-CONNECT’s monthly newsletter and the Neuro-Oncology Branch’s Twitter account and website. She expertly creates educational content and promotional media across platforms and, in doing so, has helped connect patients with the information they need to find the best care and treatment and understand what to expect along their cancer journey.

Expanding Advocacy Outreach

A significant part of NCI-CONNECT’s mission is to partner with advocacy organizations. Partners are non-profit groups who work with NCI-CONNECT to identify and engage adult patients with select rare central nervous system tumors by disseminating information about clinical trials and new approaches to improve care and treatment.

Cordeiro has been instrumental in connecting with top brain and spine tumor patient advocacy organizations to help them understand the mission of NCI-CONNECT. To date, NCI-CONNECT has nine partners, including two international organizations. Cordeiro provides them the resources they need to share the program’s clinical trials and available treatment and care options with patients. 

“A collaborative network with a harmonized mission can have a great impact on the progress of clinical care and research for people living with these rare cancers,” Cordeiro says.

NCI-CONNECT’s advocacy partners also participate in its disease-specific scientific workshops by sharing the patient perspective with clinicians and scientists. The patient perspective, which Cordeiro also shares at these workshops, is helping to ensure that patient quality of life and outcomes are considered when designing clinical trials and treatment advances.

In 2019, NCI-CONNECT co-hosted the International Brain Tumour Alliance’s Fourth Biennial World Summit of Brain Tumor Patient Advocates at NIH, which gathered over 96 patient advocates from 25 countries around the world for three days.

NCI-CONNECT is also partnering with its advocacy organizations, professional organizations, and other cancer centers to host virtual educational events and webinars. These events help NCI-CONNECT reach a broader audience, which is critical for rare cancers. For example, in June 2020, NCI, the University of Rochester Medical Center (URMC), and the National Brain Tumor Society partnered to host a webinar on navigating care through telehealth.

Upcoming events include Know Your Tumor: Medulloblastoma hosted by the American Brain Tumor Association (ABTA) with NCI Neuro-Oncologist Marta Penas-Prado, M.D. On August 26, in collaboration with the Society for Neuro-Oncology, NCI and URMC will present Patient-Centered Communication Via Telehealth in Neuro-Oncology. On September 11-12, Mark Gilbert, M.D., chief of the Neuro-Oncology Branch, is co-chairing the ABTA’s 2020 Virtual National Conference for patients and their families.

Cordeiro continues to expand NCI-CONNECT partnerships through public outreach. She writes feature articles for NCI-CONNECT’s blog, creates content for its social media platforms, and helps develop clinical and patient care educational materials.

Growing NCI-CONNECT

NCI-CONNECT has seen exponential growth in a short three years. It reaches nearly 30,000 unique people a month via its website and has an active online community. Its communications and outreach initiatives—credit to the Odom and Cordeiro duo—are a noteworthy part of its success.

“We continue to learn and get feedback from our community on what additional resources we can develop. People with rare cancers have overcome so much and I am grateful for anything I can do to make their journey better,” Odom says.

What is unique about the NCI-CONNECT program is its collaborations. “Our partnerships allow us to hear and share the patient perspective with researchers and providers. In turn, we are able to share scientific results from meetings and publications with people living with this disease in a way that they can absorb and understand,” Odom says.