The CHILD-BRIGHT Network is looking for a…
Patient-Partner | READYorNot | Remote | Patient or Youth
Number of positions to fill: 2
Intended for: A patient or youth
Description of role:
The ‘READYorNot’ research project is seeking patient-partners to join their Patient and Family Advisory Council (PFAC). PFAC members are invited to contribute regularly (e.g., at biweekly or monthly meetings) to the project by critiquing content and application features, providing recommendations and acting as program ambassadors throughout all phases of the project. Below are descriptions of what we will be doing and your roles as we progress.
Phase 1: Development of the iREADY online application
You will see mock-ups and prototypes of the iREADY online application, and have an opportunity to tell us what you think. You will be asked to advise and consult on the research process used to refine development of the application (e.g., methods, interview guide questions). We will also ask if you have suggestions for locating stakeholders who may wish to participate in the research process as study participants.
Phase 2: Randomized Clinical Trial
You will be asked to advise and consult on a mixed-methods (quantitative and qualitative) study, including study design and analysis. You will be asked to help us to spread the word about the project and our recruitment efforts.
Phase 3: Knowledge Translation
In this phase of the project, you will be asked to be involved in activities for moving research findings into practice. We will also seek your input for sharing knowledge effectively to reach those who need it most.
For: ‘READYorNot’ Moving Ahead with Transition of Care from Adolescence to Adulthood
Responsible to: Sonya Strohm, Research Coordinator
Works with: Dr. Jan Willem Gorter
- Attend bi-weekly or monthly meetings by phone or in-person
- Provide feedback, opinions and recommendations to the research team in any or all of the following areas:
- The online application
- Locating stakeholders
- Sharing information about the project
- Review relevant documents
Engagement details and expected time commitment:
We are looking to engage interested individuals as soon as possible, ideally for more than 1-year commitment. Your expected time commitment is about 1-2 hours per month.
Yes, according to current CHILD-BRIGHT compensation guidelines
We are seeking patient-partners, who:
- Are between the ages of 16-24,
- Have lived experience with a brain-based developmental disability
- Have access to a telephone and to a computer connected to the internet,
- Speak English.
Specific skills or experience that could be an asset:
Experience with online applications (Apps) would be an asset.