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Table 2 Responses to questions asked at the different community forums. An ‘x’ means the question was not asked in that forum. Fisher’s exact test was used to calculate the p-value

From: Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers

Question Response SCD retreat (n = 27) SCDAA (n = 26) SCFT (n = 11) p-value
Do you have a smart phone like a Samsung, iPhone, Android? Yes 25 24 10 0.39
No 2 0 1  
Do you use your phone for text messaging? Yes 27 23 10 0.56
No 0 1 0  
Do you use email for the health of someone with SCD? Yes x 14 8 0.43
No x 10 2  
Do you use social media like Facebook, Twitter or Instagram for the health of someone with SCD? Yes x 15 5 0.25
No x 6 6  
Do you use mobile apps for your health? Yes 13 10 7 0.42
No 14 15 4  
Do you use apps for the health of someone with SCD? Yes 8 15 7 0.01
No 19 6 4  
Do you know what a medical guideline is? Yes x 11 8 0.24
No x 10 2  
Would you want to know what these guidelines are? Yes 25 18 10 1
No 2 1 0  
Would you feel you could provide better care to the family member with sickle cell if you knew what the guidelines were? Yes 20 19 9 0.14
No 7 1 1  
Would you want your doctor or nurse explain the content of the guidelines to you? Yes 25 17 10 1
No 2 2 1  
Would you want a paper copy of the guidelines? Yes 20 16 8 1
No 7 5 3  
Would you want to receive text messages about the guidelines (short ones daily)? Yes 22 15 7 0.77
No 4 2 2  
Would you want the guidelines available on your patient portal? Yes x 6 9 < 0.01
No x 18 1  
Would you want guidelines in Facebook/Instagram/Twitter? Yes 25 17 7 0.1
No 2 7 2  
Would you want guidelines in mobile app? Yes 17 13 10 0.03
No 8 11 0  
Would you want guidelines in app over Facebook? Yes x 19 9 1
No x 3 1  
Facebook to communicate about guidelines and other things Yes 25 x x x
No 2 x x