Posted by Jeron Eaves and Edmo Gamelin on February 11th, 2019.
At Blue Matter, we love what we do. The work is interesting, and we always feel like we’re learning something new. There’s also a sense that, in our own small way, we’re joining in the fight against some of the world’s worst diseases. Our team members have a passion for the areas in which they work, particularly in rare diseases and in oncology. That is why we jumped at the chance to contribute in a way that is a bit outside the norm for us.
In late 2018, we had the opportunity to donate some of our time and resources to help a fantastic non-profit organization dedicated to making lung cancer a chronically managed disease: The Bonnie J. Addario Lung Cancer Foundation, or ALCF (www.lungcancerfoundation.org).
What is the Addario Lung Cancer Foundation?
The seeds of ALCF were sown in 2004 when Bonnie Addario had her life turned upside down by a diagnosis of lung cancer. Fortunately, Bonnie ultimately beat lung cancer. However, she and her family were shocked by the grim care experience. It was a whirlwind: Bonnie was faced with an ever-changing group of physicians and nurses, and a series of toxic treatments whose benefits and side effects were inadequately explained. The lack of support she and her family received left a mark.
In 2006, Bonnie channeled her negative experience, and set out to improve lung cancer care by founding ALCF. Their mission is simple, powerful, and ambitious: to make lung cancer a chronically managed disease. The foundation provides a breadth of services and resources that aim to make this mission a reality, including:
- Patient Education Handbook
- Lung Cancer Living Room
- Lung Cancer Registry
- Clinical Trial Match Program
- Addario Lung Cancer Medical Institute (ALCMI)
- Centers of Excellence (COE)
The ALCF Centers of Excellence Program
Blue Matter’s work focused on the Centers of Excellence (COE). The COE program aims to close the care gap in lung cancer by supporting the adoption of “patient-focused, coordinated, multidisciplinary care with the expertise of a nurse navigator” in the community hospital setting, where a majority of lung cancer patients are treated.
Hospitals are invited to the COE program if they meet rigorous quality care standards. COEs work together to generate and disseminate lung cancer treatment practices that support the highest quality patient-centric care.
2018 Centers of Excellence Summit and Blue Matter Support
From December 5-7 2018 in Nashville, TN, ALCF hosted the first Centers of Excellence Summit. The summit provided a forum for COE members to collaborate, share, and learn from one another.
Blue Matter played a role in preparing for and facilitating parts of the summit. We had two key focus areas: Our first and primary focus was to help ALCF develop and facilitate a workshop for the summit, “The Challenge Questions Workshop”. Secondarily, we captured, synthesized and helped to disseminate the rich discussions from the summit.
For the Challenge Questions Workshop, facilitators from Blue Matter and ALCF led discussions with groups of 10-12 COE HCPs. These discussions set out to achieve three objectives:
- Understand gaps in lung cancer care from a patient’s perspective
- Identify barriers impeding hospitals from adopting multidisciplinary care
- Generate actionable solutions that the COE community should aim to implement in 2019
We unearthed many issues across the treatment journey, touching on lung cancer prevention, screening, diagnosis, treatment, and care continuity. In addition, participants shared patient financial, educational, and logistical needs that COEs could help address.
We also identified financial, infrastructural, and cultural issues hospitals may face when trying to adopt multidisciplinary care. Teams wrapped up by generating various solutions COEs could potentially implement in 2019.
Overall, this workshop was vitally important for the COE program because it helped ALCF identify unmet needs and potential solutions to be implemented in 2019 and beyond.
A Thank You from Blue Matter
The Blue Matter team felt privileged to be a part of the 2018 Centers of Excellence Summit. We enjoyed helping a great organization like the Addario Lung Cancer Foundation. We also learned a lot during the process. Finally, it was rewarding to contribute (even if just in a small way) to improving care for lung cancer patients around the world.
