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Why did we build a tool to visualize data collected from patients and caregivers?
Community members provide data but too often never see how their data was used. Research data is mostly published in medical journals written for researchers and scientists versus the general public. Also, medical journals require the public to pay for access.
We used data from a study called Project PRIORITY to create this data explorer. Project PRIORITY was a partnership between the EGFR Resisters and LUNGevity Foundation. We published the findings in a medical journal which you can read here if you are interested (free to access)! However, we also wanted to make more of the data available to the EGFR community.
The main audience for the data explorer is patients and caregivers; however, we also hope that researchers use the explorer to help support their work.
The tool is now available for patients, caregivers, and researchers to view and explore here. This interactive data explorer was made possible by Project PRIORITY participants, the EGFR Resisters advocacy group, and the LUNGevity Patient-Focused Research Center team.
Who was involved in designing the tool?
We’d love to give a shout out to the people who made this tool possible. Sean Pettersen, a caregiver to his wife Venus, is a professor who teaches students how to build these tools with data. Gloria Arroyo de Leon, a patient living with EGFR-mutated lung cancer. Chesie Yu, a former student of Sean’s who built the website. As well as everyone on the Patient Focused Research team. Of course, both Jill Feldman and Ivy Elkins of the EGFR-Resisters were pivotal in collecting data and reviewing the data explorer. It really does take a village!
What does the data explorer do?
This is an interactive tool that you can use to explore what patients and caregivers shared as part of our collaborative research study with the EGFR Resisters.
The study team was interested in understanding the treatment experience of EGFR-positive lung cancer patients. Specifically, the team wanted to:
- Understand the demographics and needs of the EGFR-positive lung cancer community
- Identify areas for improvement in diagnosis and treatment
- Give voice to patient concerns regarding risk factors, symptoms, and side effects of treatments
The tool is powered by online survey data this study generated and includes the experiences of over 400 participants.
You can use this tool to click through different topics like biomarker testing, side effects, and mental health to see what other people, like you, shared. You can pick a topic, explore at your own pace, and apply the results to be more like you—based on gender, age, and cancer stage.
What topics are covered?
There are 14 different pages to explore. Topics covered include:
- Clinical information
- Disease details (e.g., where the cancer has spread)
- Who was in the study
- How people were diagnosed
- Information on biomarker testing
- Risk factors and exposures
- Treatments by cancer staging
- Side effects
- Clinical trial experiences
- Mental health
- Information about the care team
What kind of questions can the tool help answer?
There are a wide variety of questions, but some examples of answers are:
- Ten percent of female participants 65 and older with stage IV EGFR-mutated lung cancer were not at all comfortable talking with their treating doctor about the symptoms they were experiencing.
- Just under half (49%) of men aged between 41 and 45 years said that support system understands their disease well.
How was the data collected, and can I add my data?
The data are from the Patient Reported Initiative On Resistance, Incidence, Treatment studY (Project PRIORITY), which was a patient-founded and patient-driven research partnership between the EGFR Resisters and LUNGevity Foundation.
The data were collected between 2019-2020, and the study is officially closed. Unfortunately, this means we cannot add new data. If you are interested in participating in research to add your data to future projects like this, please fill in this form.
Click here to visit the EGFR Data Explorer
