Preparing for stakeholder engagement in your research
Meaningful engagement of patients in research takes time and planning. Provide patient advocates with sufficient orientation information about your project in advance so that they can make an informed decision about their participation. Before you reach out, you may want to assemble the following information:
- Plain language summary of your project, including:
- study objectives.
- the relevance or importance for patients.
- the stage of project planning or implementation.
- The specific activities or areas of input where you plan to engage advocates.
- The type of expertise/personal experience you are looking for.
- A list of specific questions or topics where you would like patient stakeholder input.
- A project team management chart, including the name and contact information for the person who will be organizing communications with the advocate.
- A realistic estimate of the time commitment.
- Note that if your project requires stakeholders to complete paperwork, such as a subcontract, biosketch, registration as a consultant, description of their role or invoices, these can be timeconsuming and may require additional resources that your stakeholders don’t have. Consider assigning supportive staff on your team to assist with these tasks.
- Any compensation you are planning to offer for efforts.
- If your project includes engaging patients as part of your study team, we encourage you to include compensation for their time. Compensation of engaged patient partners should reflect the level of expertise, commitment, responsibility, the type of work involved and the degree of participation.
- If your project includes engaging representative participants as reviewers, we encourage you to offer them a stipend/gift card/compensation for their assistance. Additionally, make sure to reimburse them for any related expenses, including travel, parking, etc.
- If your institution’s IRB requires patient stakeholders to undergo Human Subjects in Research training, you may need to provide stakeholders with access to training. Ask your IRB if your institution can provide training through the Collaborative Institutional Training Initiative (CITI). Alternatively, the Center for Clinical and Translational Science (CCTS) has a free training program for community partners in research (registration is required, but it’s free). See the resource blocks for links.
It is important to be as detailed and organized as possible. Patient stakeholders have expressed frustration when they have been asked to participate in meetings that include advanced scientific information but received no prior preparation. Clearly explain your expectations for their participation in a meeting ahead of time, and communicate where their input is needed most. If there will be scientific presentations, provide definitions, pre-reading or other resources so that they can follow the discussion and provide meaningful input. Ask for their comments during meetings. Let them know that you appreciate their contributions.