The ePRO team attended the Clinical Trials Ontario (CTO) conference in Toronto, on March 8-9, 2017. Dr. Carolyn Steele Gray, principal investigator, was a member on the panel session entitled, “Patient engagement by design in clinical trials and research: community building and the integration of patient perspectives in the design, implementation and evaluation of research.”
Dr. Steele Gray shared our experiences, perspectives and insights on the innovative approach we used to engage patients, caregivers, physicians and other healthcare professionals in the development and evaluation of the ePRO mobile application and portal (ePRO tool). Patient, caregiver and healthcare provider engagement has been an integral part of every stage of the process from design to evaluation of the ePRO mobile application and portal. In phase 1 - needs assessment, we conducted patient and caregiver focus groups as well as interviews with healthcare providers and experts. In phase 2 - tool development, we used working groups comprised of patients and caregivers as well as providers and experts. In phase 3 - usability pilot, we used surveys to get feedback from patients and providers. In phase 4 - exploratory trial, we interviewed both patients and providers following a 4 month trial exploring the impact and implementation of the tool. We are currently in phase 5 which is a full evaluation, scale and spread of the ePRO tool. In this phase we will continue to engage patients and providers through focus groups and interviews as well as ongoing relationship building with providers and staff at the participating Family Health Teams.
Through patient and provider engagement, our goal is to ensure that the ePRO tool is both useful and meaningful to patients and their providers as they continue to work together to manage complex health conditions. Thank you to all those who have expressed interest in the ePRO tool; please feel free to contact us through this website and stay tuned for updates.