You may choose to modify your priorities now that you have learned more about engaging as a patient partner on a research team. Review your identified (My) Priorities and decide if you wish to modify/change:
- Where you wish to engage as a patient partner in the research process, and
- Your preferred level of engagement.
Lastly you will do a readiness quiz before moving on to make you decision.
Review My Priorities
Drag and drop each step in The Research Process from where you envision being MOST engaged as a patient partner on a research team to LEAST engaged as a patient partner on a research team.
1Identifying and PrioritizingIdentifying and Prioritizing, This is when the research question is being formed, and includes making decisions about what will be studied and how it will be studied.
2DesignDesign, When the research question is decided, a plan to answer it is developed.
3Development of the Grant ProposalDevelopment of the Grant Proposal, This is a document that explains the research question, the research design, and why all of this is important. It is submitted to a funding organization for their consideration to fund.
4Preparation for Execution of the StudyPreparation for Execution of the Study, This is before the clinical trial starts and when the team is preparing all of the details related to starting it.
5Data CollectionData Collection, Once the research has started, data are collected in order to help answer the research question. Depending on how the study is designed, different types of data are collected.
6Analyzing and Interpreting DataAnalyzing and Interpreting Data, After data are collected, they are analyzed and interpreted to understand the findings.
7DisseminationDissemination, This means sharing the research results beyond the research team (for example, to study participants, at conferences, and in journals).
8ImplementationImplementation, This means using the research findings in inform everyday practice.
9Monitoring and EvaluationMonitoring and Evaluation, A clinical trial is often reviewed while it is process, and can be reviewed after it finishes.
Review My Levels of Engagement
Review your identified (My) Priorities and decide if you wish to modify/change: 1) Where to Engage as a Patient Partner in the Research Process, and/or 2) Level of Engagement.Inform: You will keep patient partners informed.
Consult: You will keep patient partners informed, listen and acknowledge concerns, provide feedback on how input is used.
Involve: Work with patient partners so their concerns are reflected and provide them feedback on how input is used.
Collaborate: You will work with patient partners to include their advice into decisions as much as possible.
Empower: You will implement what patient partners decide.
1Identifying and Prioritizing
3Development of the Grant Proposal
4Preparation for Execution of the Study
6Analyzing and Interpreting Data
9Monitoring and Evaluation
My Readiness Quiz
Now that you have reviewed and confirmed your (My) Priorities, we’d like you to think about and indicate how you feel about the following statements related to being included as a patient partner on a research team. You are asked to select how you feel on a scale of 1 to 5, with 1 being “I strongly disagree with this statement” and 5 being “I strongly agree with this statement”
I will be able to provide insight(s) into what matters most to people like me
I will be able to inform the design of the study and materials that are given to participants.
I will be able to help do the research, including data collection
I feel that I could talk to at least one member of the research team if there are times when I feel unheard or the engagement feels like tokenism
I will be able to suggest ways to recruit participants
I will be able to provide insight(s) from the patient perspective when the data is being analyzed and interpreted
I will be able to help with summaries of the research and with the team’s ‘knowledge translation’ efforts (for example, helping present or presenting the research at a conference or helping write and comment on papers (also called publications)
I feel the research team will understand when my health or life may prevent my full participation on the team
I feel comfortable reaching out to my main contact on the research team for an update when not much is happening or when I feel uninformed
Your Readiness Results :
You may not be ready
You scored less than 3 on several priority items, which suggests you are likely not ready to engage as a patient partner on a clinical trial team. It may be helpful to review items in which you scored low (1 or 2).
You are ready
You scored less than 3 on at least one priority item, which suggests you are ready to engage as a patient partner on a clinical trial team. It are helpful to review items in which you scored low (1 or 2).
You are likely ready
You scored more than 4 on at least one priority item, which suggests you are likely ready to engage as a patient partner on a clinical trial team. It may be helpful to review items in which you scored low (1 or 2).