Table 1.
Communication tool prototype
| Section of tool | Topic/card title |
|---|---|
| Part 1: Basic research information | • What is clinical research?a • What is standard of care?b • How does this study relate to my care? • What is informed consent?a • What does my signature mean? • Why would I want to join? • What are the different types of clinical research?a • Why wouldn't I want to join? |
| Part 2: Trial specific information |
Biobanking information: • What are samples? • How are samples collected? • What is biospecimen banking? • What information is connected to my sample?a • How long are my samples stored? Clinical trial information: • What is a treatment group? a • What is a control group? • What is a placebo? • What is randomization? • Blinded/Double blinded studies b • Phases of clinical trials b Healthy participants in research: • If I am healthy why do I need to participate? |
| Part 3: Patient rights | • What are my rights as a research participant? b • Can I change my mind? • How is my identity protected? • Who has access to my information? • Are there any costs or payments for participating in the study?a • If I decide to join what happens next?a • Will I find out the results of the research? b |
a
revisions made to card
b
new card created following participant feedback