With the Bright Side Navigator project, Data for the Common Good and Team Bright Side are partnering to better understand the experiences of pediatric cancer survivors and to develop improvements to survivorship care.
About the Project
Bright Side Navigator aims to address the challenges that childhood cancer survivors face in their follow-up care throughout their lives. The goal of this research study is ultimately to create a widely-available ecosystem for patients, providers, and researchers to access a wide range of data and recommendations for care for survivors of cancer. In this ecosystem, cancer survivors will have continuous access to their treatment and follow-up data, with the ability to share data on demand with clinicians. In a later phase of the project, a de-identified version of the data could be added to a long-term follow-up data commons to enable researchers greater access to this valuable information.
Get Involved!
The first phase of the Bright Side Navigator project consists of an interview study to better understand the experiences of pediatric cancer survivors and their families. We are seeking to enroll participants for this study.
If you are interested in participating, please contact D4CG Research Coordinator Zari Henry at zarih@uchicago.edu.
Frequently Asked Questions
What will involvement entail?
This project includes three phases:
- Phase 1 – Patient and family interviews (months 0-12)
- Phase 2 – Electronic Health Record Data Extraction Pilot (months 0-12)
- Phase 3 – Creating a pilot centralized long-term follow-up platform and data commons (months 12-36)
Your involvement would be in Phase 1 and Phase 2. Phase 1 would include a pre-interview survey and an interview. In Phase 2, you would share your electronic health records.
Are there any anticipated risks to the study?
This project is not likely to present any risks to participants, but great care will be taken to minimize any potential risks. Participants could be identified based on responses included in publication; we will minimize the risk by not including names or identifying information. Identified data will be maintained in a secure, protected environment within the University of Chicago firewall. Only members of the research team will have access to this information. De-identified data (no names of research staff or faculty) will be shared among staff and collaborators via a secure Box folder.
Are there any benefits to participating?
There is no direct benefit to survey participants. We will share the outcome of the research in a future publication and/or presentation. If survey participants provide their email address, we will send them a link to the publication once it is publicly available.
How long will I be in the study?
The first phase of this study consists of two parts: a pre-interview survey that may take 20 minutes, and a 30-minute interview. The next two phases of the study (data extraction and development of the data commons) will require no further interviews.
Meet the Bright Side Navigator Team
Samuel Volchenboum, MD, PhD
D4CG Director & Pediatric Oncologist
Ellen Cohen, MPP
D4CG Deputy Director
Enal Hindi, MS
D4CG Sr. Project Manager
Zari Henry
D4CG Research Coordinator
Kirk Wyatt, MD
D4CG Sr. Clinical Advisor & Pediatric Oncologist
Alex Tate, PhD
Sociologist and Qualitative Research Expert