How Can Patients Drive Research?
If someone had told me when I was first diagnosed back in 2013 that I would be helping to drive lung cancer research, I would not have believed them. But, in my 4+ years of living with lung cancer, I have found myself getting increasingly involved in research advocacy work.
How Can Patients Be Involved?
How can patients play a role in research if they aren’t researchers and medical professionals? Well, while patients don’t need to be scientific experts; they can still play extremely valuable roles by providing information about their patient journeys. They may not be medical experts, but they are experts on the needs and wishes of patients living with lung cancer.
In August 2017, I co-founded a group called the EGFR Resisters, along with six other lung cancer survivors and one caregiver. The goal of this group is to make EGFR positive lung cancer into a manageable chronic disease. We aim to accelerate research in order to improve patient outcomes. In the eight months since the founding of the EGFR Resisters, we have already built a community of close to 300 survivors and caregivers in 16 different countries. There is strength in numbers!
Other lung cancer patient groups have been formed in the past couple of years. The first one was the ROS1ders and we have learned a lot from them about how to structure our EGFR Resisters group. There is also an ALK Positive group and a group that focuses on Exon 20 EGFR mutations. All of these groups share the goal of building a community of lung cancer survivors with commonalities so they can drive research in their specific mutations.
Sharing Knowledge & Advancing Research
While members benefit from support and knowledge sharing through closed Facebook groups, these patient-driven groups go a step further than the typical lung cancer patient support groups. They gather data on their members, raise money for research, and partner with researchers, clinicians, advocacy groups and pharmaceutical companies to spearhead novel research and clinical trials.
What is the most useful part of this online community?