PHASE OF ACTIVITY

NOTES

PLANNING

• Form a team led by patients or involves patients as equal partners

• Depending on the condition, population, or other factors, include other key stakeholders

• Agree upon a model for ensuring processes are patient-driven and/or co-created

• Identify and calculate the patient and other project members’ time, meeting expenses, research expenses, vendors, etc.

• Assess readiness to get started by using the provided resources

• Identify the costs and financial needs to create a budget

• Require all team members to undergo patient-engagement training as needed

• Develop and agree upon an approach for cataloging all major project decisions for documentation and knowledge sharing

GATHERING IMPACT DATA FROM PATIENTS

• Explore and collect sources of existing patient-generated impact data

• Evaluate the impact data (using the “Is it Good Enough?” tool)

• Understand rules and regulations and prepare for research (e.g., seek Institutional Review Board approval)

• Embark upon the most relevant qualitative or mixed methods approaches for data collection

PRIORITIZATION BY PATIENTS

• Apply relevant prioritization methods to cull patient-reported impact data to those impacts that are most important

GATHERING IMPACT DATA FROM OTHERS

• Explore and collect sources of existing data and input from other stakeholders

• Understand rules and regulations and prepare for research (e.g., seek Institutional Review Board approval)

• Embark upon the most relevant qualitative or mixed methods approaches for data collection from stakeholders

PRIORITIZATION BY PATIENTS AND OTHERS

• Apply relevant prioritization methods to prioritize all data by patient and other stakeholders

• Ensure patient-prioritized impacts are not “lost” during the prioritization

ASSEMBLE A PC-CIS

• Maintain transparency and use enough detail to allow others to learn from and replicate your methods

• Describe entire process and pathway from establishing the team to assembling the prioritized list of impacts

• Describe how the lists of impacts changed (grew or were reduced, and what they are) throughout the process (see reporting diagram)