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Table 2 Key recommendations from researchers and patient contributors about the novel approach (TATs and follow-up discussion) for patient involvement in questionnaire design

From: Patient involvement in questionnaire design: tackling response error and burden

Key Recommendations

Description

Clear TAT instructions

• Ask contributors to continuously say what is going through their minds with limited pauses.

• Avoid asking for evaluation (e.g. “tell me what you think about…”).

• Always ask if contributors have any questions about the TAT procedure.

Practice TAT

• Practice TATs with another questionnaire (similar structure, different topic).

• Jointly reflect on the practice exercise with the contributor.

• Aim for minimal researcher interruptions during the practice task.

Multiple feedback methods

• Contributors may not feel comfortable with certain feedback methods (e.g. TATs).

• When using TATs, always have alternative feedback methods available (e.g. open-ended feedback sessions).

• Use structured feedback methods (e.g. TATs) as a springboard for other feedback methods (e.g. open-ended discussion).

Good rapport

• Establish good researcher – contributor rapport before gathering feedback.

• Making contributors feel comfortable will generate more detailed feedback.

• Making sure contributors have a positive PPI experience will benefit future research (e.g. with their continued involvement in other studies).