Questions and misperceptions about patient stakeholder engagement
Below we address some questions and misperceptions about patients’ ability to contribute to the research process.
- Question: Can patient stakeholders contribute meaningful input into the design of research studies?
- Our experience: Many investigators have shared that engaging FORCE advocates enhanced their study design.
- Concern: Patients do not have enough training to understand the science or the research process.
- Our experience: Most clinical research can be described in plain language that is understandable to patients. Many organizations (including FORCE) have programs that train people with no scientific background to engage as advocates in research. Advocates can help researchers more clearly explain the science in straightforward terms, which will be needed for consent forms, lay abstracts and patient-facing communications. Patient stakeholders can review these materials to see if they are understandable and engaging.
- Concern: Most patients are not interested in the science behind research.
- Our experience: Many patients and researchers report their bi-directional research interactions as interesting and engaging. Many researchers find that patient stakeholders bring fresh ideas to the team, bring up important points that need to be addressed and demonstrate how meaningful successful research can be on a personal level.