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 a patient-centric data donation platform that will engage and empower radiotherapy patients to contribute to research in order to help propel Big Data research in Radiation Oncology. Methods Following a participatory stakeholder co-design approach, data donation was facilitated by the addition of two new 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. Second, self-managed study registration with patient consent and data donation were enabled by 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 patients will be better prepared for their radiation treatment and better informed about the impact of sharing these data with researchers. The research module lists information about ongoing studies, data requests, and electronic consent forms. Patients who consent to a given study can specify which data they share, answer questionnaires from researchers, and receive important updates about the studies they join. Conclusions A novel infrastructure was created to facilitate data donation and recruit radiotherapy participants for research studies by empowering patients through education and control of their health data. This platform has the potential to help further Big Data efforts in radiotherapy and 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
