Empowered Patients, Informed Research - A pilot project for radiotherapy data donation using the Opal patient portal
Image credit: Kayla O’Sullivan-StebenAbstract
Purpose To create the patient-facing component of a patient-centric data sharing platform that will engage and empower radiotherapy patients to contribute data to research to help propel Big Data initiatives in Radiation Oncology. Methods Following a participatory stakeholder co-design approach, data sharing was facilitated by the addition of two JavaScript interfaces to the Opal patient portal app (opalmedapps.com). First, patients were given access to their radiotherapy data with the creation of a radiotherapy module that loads DICOM-RT files. Next, patients were enabled to respond to study invitations through e-consent forms with the addition of a research menu. Results The radiotherapy module presents a customized explanation of a patient’s treatment plan based on their treatment parameters. It also displays an interactive 3D rendering of the patient’s body and planned treatment beams for visualization. By presenting this complex data in an easily understood manner, it is anticipated that users will be better prepared for their radiation treatments and more willing to share their treatment data with researchers. The research module lists information about ongoing studies, data requests, and electronic consent forms. Patients who consent to participate in a study can specify which data they are willing to share, answer questionnaires from researchers, and receive updates about the studies they join. Conclusions A novel infrastructure was created to facilitate data sharing and recruit radiotherapy participants for research studies by empowering patients through education and access to their health data. This platform has the potential to help further Big Data efforts in medical research.
Luc Galarneau
Research Associate
Susie Judd
DevSecOps Manager
Andrea Laizner
Associate Investigator, RI MUHC & Assistant Professor, Ingram School of Nursing
Tristan Williams
Social Media Coordinator, Patient Partner
