An Update on Patient-Driven Research

Patient advocate Janet Freeman-Daily and I were invited to give a presentation recently at IASLC’s 2020 North American Conference on Lung Cancer (NACLC) about patient-driven research and why it is so critically important. Now that more people are receiving biomarker testing and being treated with targeted therapy, patients with lung cancer are living longer and better, forming oncogene-driven patient groups to focus on advocating for improving their own outcomes.

Patient-led oncogene groups

The first patient group to form was the ROS1ders, which started over 5 years ago. There are now 10 patient-led oncogene groups that offer support to patients and caregivers, increase awareness and education, improve access to effective diagnosis and treatment, and accelerate and fund research. These include ROS1ders, ALK Positive, Exon20 Group, EGFR Resisters, RET Renegades, ALK Fusion, KRAS Kickers, NTRKers, MET Crusaders, and BRAF Bombers.

While each community sets its own research priorities, the groups all agree that patients can contribute to research in many ways beyond participating in clinical trials. Partnerships between patient groups and researchers, clinicians, advocacy groups, pharmaceutical companies, and other industry partners can help uncover and address previously unmet patient needs, especially when patients are included in all steps of the research process.

ROS1 Cancer Model Project

One example of a patient-driven research project is the ROS1 Cancer Model Project, to which patients donated both funds and tumor biopsy tissue or pleural fluids. Through a collaboration with a researcher at the University of Colorado, one arm of the study has resulted in the creation of nine new ROS1 cell lines that are invaluable to scientists in learning more about ROS1 tumor biology, investigating resistance mechanisms, and developing better biomarker tests. This would not have been possible without partnership with the ROS1ders patient group.

Capturing real-world data

Capturing real-world data is another important way that patient groups can help with furthering research. The EGFR Resisters collaborated with LUNGevity Foundation to create Project PRIORITY, a study of the real world lived experiences of patients with EGFR positive lung cancer.

After surveying 350 patients and caregivers globally in the largest ever real-world study of EGFR positive lung cancer, Project PRIORITY has resulted in the gain of a lot of valuable information about demographics and risk factors, diagnosis and treatment, and the psychosocial impact of an EGFR positive diagnosis. This information is very different from data gathered in clinical trials, which don’t represent the true patient due to trial criteria that often exclude real-world patients due to brain mets, prior cancers, and poor performance status.

Hosting conferences by cancer type

Another way patient-driven groups have participated in research is by having research summits for their type of cancer, such as the EGFR Resisters Research Summit, created in collaboration with a medical education company, CEC Oncology. Young investigators are invited to present their research, collaborate, and receive mentorship from expert judges, along with training in presentation skills and grant writing. The junior faculty and fellow receive encouragement to continue their work and an opportunity to break down institutional barriers and work with others. Great feedback from this 2019 summit has led to a second summit occurring virtually in November 2020.

Raising funds to support lung cancer research

A few of the oncogene groups, such as ALK Positive and the Exon20 Group, have raised funds themselves to accelerate research by offering grants in the last few years. The EGFR Resisters are currently participating in this process as well, partnering with LUNGevity to fund an award for translational research that will have a direct impact on the outcomes of people with EGFR positive lung cancer. These projects are patient-driven and patient-funded research that would not exist without the dedication of the communities, the passion of research advocates, and important collaborations.

It's important for patients and researchers to collaborate

Patients and researchers can both benefit through working together. Including patient groups in research makes it possible for scientists to understand what is important and meaningful to patients. As patients, our perspective and urgency can and should drive important research questions.

In addition to the examples already discussed above of patient-led research, the patient groups can also offer scientists and physicians a link to patients for clinical trials and dissemination of information. In summary, such collaborations are a win-win for all.

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.