Provide a welcome and engaging environment
Academic members of your research team may have a common background, training, vocabulary and understanding that may not be shared by patient stakeholders, whose diagnosis, condition, circumstances or lack of scientific training may leave them feeling stigmatized or vulnerable, especially at the beginning of a project. You can help them feel welcome and encourage their active participation in the following ways.
At the beginning of a project or meeting
- Arrange an introductory call between the patient stakeholders and one or two core study team members. This is an opportunity to align expectations. Let the stakeholders know that you and your team value their input and encourage them to speak up during meetings. This is especially helpful for projects that include large group meetings.
- Introduce advocates to the study team and acknowledge their lived experience and other expertise.
- Designate a member of your project team as a consistent point of contact for patient stakeholders. If you are still in the planning stage of your study, consider who that contact might be and budget accordingly.
- Explain your project, timeline and expectations in plain language with clear examples.
Throughout the project
- Provide timely updates on changes in the study that may affect their scope of work, involvement, timeline or the project as a whole.
- Request patient stakeholders to attend those meetings where they will be able to follow and feel productive. If you invite them to all meetings, emphasize which ones are most relevant to their role in the study.
- Schedule meetings that accommodate their availability and accessibility.
- Incorporate pause points during meetings for people to ask questions or provide feedback. If you want advocate feedback on specific items, let them know ahead of time if possible, so they are not caught off guard during a meeting. Encourage them to speak out, and make sure to ask for their opinions or feedback.
- If assigned reading is long and/or technical, provide plain language versions and direct stakeholders’ attention to the specific sections where you would like their input.
At the end of a project
- Inform patient stakeholders of the project outcome.
- Acknowledge them in publications/presentations.
- Offer them a stipend/gift-card/compensation for their assistance.