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IC4U

Principal Investigator(s): Dayre McNally

Building a citizen critical care community – The IC4U partnership: A sustainable community for patient and citizen engagement in pediatric critical care research

Background: In recent years, there has been a growing emphasis on citizen (patient) engagement in all fields of clinical care. The shift towards seeing citizens as partners is guiding research and clinical care to focus on the aspects that matter most, and to which patients and families want to contribute. Unfortunately, citizen engagement is challenging in the critical care setting, and when it does occur, it frequently involves obtaining input from a small number of hand selected individuals. Instead, proper engagement should be timely, organized and involve input from a large citizen group of varied geographical and cultural backgrounds. Fortunately, recent technological advances provide new opportunities to significantly improve on the current state of citizen engagement in critical care research.

Proposal: The IC4U platform is comprised of two related innovations, that, when brought together, will redefine and accelerate patient engagement in the area of pediatric critical care. First, we aim to develop an innovative user-friendly, adaptable, web-based software platform (IC4U) with functions that provide an online community with the ability to connect, create teams, and work together through all stages of the research cycle. Second, we propose to create the first generation “Canadian Critical Care Community." By leveraging the reach of the Canadian Critical Care Trials Group (CCCTG), we anticipate citizen recruitment from the majority of pediatric ICUs in Canada, creating a community that is both large and diverse (age, disease process, geographically, culturally). 

Methods: As certain platform features will be necessary to establish the online community and facilitate basic patient engagement functions, we will initially focus on building a base platform and core functions. Thereafter, we will continue to refine and further develop the platform with active input and guidance from the IC4U Community - a critical step in human-centered design. Utilization of proven software components from other platforms developed by the project team will allow for more rapid development of the platform and earlier engagement of citizens (i.e. insightScope – a platform for crowdsourcing knowledge synthesis in healthcare).

The following core features will be evaluated as part of the base platform:

  1. Sign-up and profile page: Patients and families will be able to sign up to the platform and create a profile and share details of their experiences and interests.

  2. Communication: Communication tools (email, live chat area) will allow citizens and researchers to form partnerships and communicate throughout the lifecycle of a project.

  3. Delphi/Survey: These functions will be used to identify research priorities, and by researchers seeking guidance from the community on aspects of the projects (e.g. outcome selection, intervention design).

  4. Document and protocol feedback: Researchers will be able to post their study protocol and other documents (e.g. consent forms, recruitment posters, dissemination material) and obtain feedback from the community (document mark up, voting, survey and delphi).

  5. Trial details and progress updates: Patients and families can read about current and upcoming PICU studies, and “follow” projects to receive live updates and progress reports. Newsletter, final study results and next steps will also be posted.

Application: We anticipate that these two innovations will address a major gap in the field, facilitating a dramatic increase in the quantity and quality of citizen engagement in the field of critical care.  While the online platform will initially focus on pediatric critical care, if successful, we plan to rapidly expand the platform to include other age groups and related medical conditions (e.g. acute care, surgery, chronic disease, etc.). The platform will also focus on COVID and consider the need to be responsive to future pandemics and other population health emergencies.

 


Coordinators: Katie O'Hearn
Co-investigators:

Karen Choong, Kirsten Fiest, Kevin Holmes, George Brook, Sylvie Debigaré