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

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