Table 2.

Potential pitfalls and mitigation strategies for patient engagement in research

Pitfall	Scenario	Mitigation Strategies
Initial engagement	Finding patients to engage is challenging.	Develop a register of interested patient researchers by providing consent forms for future contact during the ICU stay.
Training	To feel supported and in order to conduct rigorous science, patients should receive appropriate training for their roles, including expectation setting.	Formalized training programs for patient engagement in research exist (16). In the absence of these resources, patient researchers should be trained appropriately for their roles, which could include attending short courses, webinars, role-play activities, and shadowing. A mutual understanding of expectations (e.g., time commitment, outputs) should also be outlined.
Compensation	Some patient researchers do not wish to receive compensation for their time. Others, especially those committing substantial effort, desire remuneration.	Compensation should be guided by ethical and funder mandates (23, 24) and can take the form of cash or cash equivalents.
Privacy and confidentiality	Individuals without formal research training may not have the same appreciation for research ethical issues, including privacy and confidentiality.	Together with appropriate training for the role in which they are participating, patient researchers should also be trained in core ethical principles for conducting health research in humans (25).
Resistance	There may be resistance from administration, clinicians, and researchers for engaging family members in research.	Perceptions of increases in burden and risk (to each clinician, researcher, administrator, and family member) can be minimized through knowledge translation efforts, including education and engagement of a local champion.
Sustainability	The same individuals are always approached to participate. Patient researcher involvement should be evaluated regularly.	Relying on the same patients may result in burnout and dissatisfaction. Perspective may shift from patient/family partner to researcher over time.

Definition of abbreviation: ICU = intensive care unit.