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Table 5 Level of engagement in the six research steps in the included 18 articles, measured with Arnsteins’ participation ladder

From: Patient engagement in the design of clinical research in Noonan syndrome spectrum disorders: a scoping review

Research step

Total of 18 articles

Level on Arnsteins’ ladder

Step 1 Identifying the general study

0

 

Step 2 Choosing the research topic

9

Consultation (level 4): 7 times

Placation (level 5): 2 times

Step 3 Formulating plan and technology

2

Consultation (level 4): 1 time

Placation (level 5): 1 time

Step 4 Collecting data

7

Informing (level 3): 6 times

Consultation (level 4): 1 time

Step 5 Analyzing and interpreting data

3

Consultation (level 4): 1 time

Partnership (level 6): 2 times

Step 6 Writing content and other ways of presenting the findings

10

Consultation (level 4): 6 times

Placation (level 5): 2 times

Partnership (level 6): 2 times