The purpose of this pilot study is to explore patient opinions and preferences on being contacted for research at UHN. The study uses a one-time survey. Specifically, we want to understand patient opinions on research and the methods patients can use to indicate if and how they would like to be contacted about research. The survey will gather feedback on possible future directions and policy changes.

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Inviting potential participants and providing them with an introduction to a research study is an important part of the recruitment process. A common way to introduce a study is for a member of the patients’ care team to explain the study and ask if the patient would be open to being contacted by a researcher. This process can be complicated and require many steps. This may make it harder for everyone to have the same opportunity to participate in research. It also places extra pressure and burden on already busy clinics.

In 2022, University Health Network (UHN) introduced myUHN, an online patient portal as part of its electronic health record (EHR) system. One feature, “Permission to Contact” allows patients to indicate in their health record whether they are willing to be contacted about research opportunities. This allows researchers to contact willing patients directly, instead of through their care team. Since its introduction, engagement with this feature on myUHN has been low.

 

The survey will be designed by the study team using existing research and guidance from content experts. Up to 100 people registered as patients at UHN, aged 18 or older and English-speaking can participate. The survey will be completed by participants using an online survey portal called REDCap. Paper responses will be entered manually into the survey portal and stored securely.

People with Lived Experience (PLEX) will be included on the research team to varying degrees throughout the project, including study design, survey design and review, data analysis, and sharing of results.