Why Should Advocates Attend Academic Lung Cancer Conferences?
Who is Janet Freeman-Daily? This is a question with many answers. A former aerospace engineer, Janet is also a lung cancer survivor, tireless patient advocate and social media rock star. Diagnosed in 2011 with non-small cell lung cancer, Janet quickly began learning about genomic testing and precision medicine. She joined a clinical trial for those whose lung cancers possess ROS1-positive mutations, and she has had no evidence of disease for nearly five years.
Janet’s lung cancer journey has brought her into the world of patient activism. Janet’s award-winning blog, Gray Connections, has been dubbed the “Best Lung Cancer Blog” by Healthline every year since 2014. Janet is also the co-founder of Lung Cancer Social Media (#LCSM), and she is a contributor to several publications. Lastly, Janet has become a fixture at academic conferences around the world that focus on lung cancer and other thoracic malignancies, an experience that has been helpful and rewarding in a variety of ways. “Over the past few years, I have attended six to eight scientific meetings per year,” Janet said regarding her involvement. “Occasionally I am invited to make presentations at scientific meetings as well.”
Attending a scientific conference can mean many things, with the experience varying depending on the participant. For Janet, attending conferences achieves multiple goals – from networking and sharing her unique perspective through her presentations to improving her knowledge base on all aspects of lung cancer. “I attend presentations that discuss clinical trials, cancer research, patient care and patient advocacy work,” Janet said on her typical conference experience. “I also network with other attendees, [including] patients, advocates, clinicians, researchers and industry members.”
With Janet being so prolific in the realms of social and digital media, attending conferences also helps make aspects of her lung cancer journey more personal and tangible. “Some of my most exciting moments at meetings are talking to the scientists, researchers, and doctors that have helped develop cancer treatments I’ve received,” she said on the experience, before adding, “My best conference experiences have been connecting in real life with others in the online lung cancer community.”
Despite there being inherent benefits to advocates attending lung cancer conferences, Janet is clear that a conference’s success from a patient advocate perspective depends on what both the attendee and the organizer put into the experience. Organizers can improve the experience of advocates by doing more to facilitate advocate-to-advocate and advocate-to-scientist connections, provide greater assistance to help advocates understand a conference’s high-level science and create more comfortable meeting spaces for advocates to relax and network while taking a break from sessions. Additionally, advocates must play an active role in their conference experience. This can include advocates carefully planning their conference route, proactively reaching out to those one desires to network with prior to attending a conference and capitalizing on tools that have been developed to help patients and advocates get the most out of a conference experience, such as those offered by the American Association for Cancer Research and the Research Advocacy Network.
According to Janet, when patients and patient advocates become successfully integrated into the fabric of scientific conferences the results pay dividends that are mutually beneficial for all involved. “We need more knowledgeable cancer patients and advocates to help others learn about the value of research, encourage participation in clinical trials and explain standard of care to patients, caregivers and the public at large.”
At the IASLC, this is a principle that is taken seriously. There is a concentrated effort made to ensure that patients and patient advocates are brought into the fold of lung cancer meetings, a philosophy reflected in the organization's efforts to create advocacy tracks at meetings, establish advocacy-specific lounges for individuals to relax and reflect on sessions and provide travel grants to help patient advocates attend the organization's annual World Conference on Lung Cancer (WCLC). Such initiatives are part of the IASLC's larger outlook on the important role of patients and advocates in the fight against lung cancer, which is why the IASLC also offers free membership for advocates, patients and caregivers; organizes an annual public awareness campaign for November's Lung Cancer Awareness Month (#LCAM); and awards the IASLC Foundation Cancer Care Team Award, which allows patients to nominate their care team for special recognition at the WCLC.
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Confronting a problem as significant and pervasive as lung cancer requires the mobilization of all members of the lung cancer community. By becoming active in her lung cancer journey and participating in scientific conferences as both an attendee and as a speaker, Janet Freeman-Daily has been able to strengthen her knowledge base, expand her network and engage in advocacy that has been of great value to clinicians, activists and patients working to end lung cancer throughout the world.
-Written by Adam Mohrbacher