Table 4 “Black People Like Me” virtual conference session pre- and post-test result highlights
Month, session no | Assessment question | Answer choices | Pre-test Responses N (%)* | Post-test Responses N (%)* |
|---|---|---|---|---|
January, Session 2 | N = 71 | N = 40 | ||
“Asthma exacerbation” is when asthma symptoms get worse. You may need steroids or to go to the hospital | True | 67 (94%) | 39 (100%) | |
False | 4 (6%) | 0 | ||
The death rate for African Americans with Asthma compared to Caucasians is: | No difference | 2 (3%) | 0 | |
2 times less | 7 (10%) | 1 (3%) | ||
2–3 times greater | 43 (61%) | 31 (78%) | ||
10 times greater | 19 (27%) | 8 (20%) | ||
Patient Centered Outcomes Research (PCOR) | Is how research findings move into real world practice | 13 (19%) | 6 (15%) | |
Helps people and their caregivers communicate and make informed decisions, allowing their voices to be heard in assessing the value of health care | 41 (59%) | 28 (70%) | ||
Research facts that make results true | 0 | 4 (10%) | ||
The study of patient experience | 16 (23%) | 2 (5%) | ||
Asthma patients can participate as research advisors | True | 68 (96%) | 36 (90%) | |
False | 3 (4%) | 4 (10%) | ||
I don’t know | 0 | 0 |
February, Session 3 | N = 93 | N = 116 | ||
|---|---|---|---|---|
Once I have taken the COVID-19 vaccine I no longer need to wear a mask or distance myself from others because I can’t catch COVID-19 | True | 2 (2%) | 1 (1%) | |
False | 90 (98%) | 115 (99%) | ||
It is important to take ________ doses of the Moderna COVID-19 vaccine for it to properly work? (choose only one) | 1 dose | 1 (1%) | 1 (1%) | |
2 doses | 91 (98%) | 115 (99%) | ||
3 doses | 1 (1%) | 0 | ||
4 doses | 0 | 0 | ||
The most common side effects people are reporting from getting the COVID-19 vaccine are: (select all that apply) | Sore arm | 80 (86%) | 107 (92%) | |
Flu like symptoms for 24–48 h | 61 (66%) | 81 (70%) | ||
Nose bleeds | 0 | 1 (1%) | ||
Tiredness/fatigue | 60 (65%) | 84 (72%) |
March, Session 4 | N = 68 | N = 38 | ||
|---|---|---|---|---|
PCOR is an acronym for: | Project center on research | 2 (3%) | 0 | |
Patient-centered outcomes research | 63 (93%) | 36 (95%) | ||
Patient centers on research | 3 (4%) | 2 (5%) | ||
None of the above | 0 | 0 | ||
PCORI has training sessions/videos to help train patients to learn how they can be more involved in all stages of research | True | 68 (100%) | 38 (100%) | |
False | 0 | 0 | ||
There is still hesitancy in the Black community to get the COVID-19 vaccine. Will you take it or have you taken it? | Yes, I will take it when it is available to me | 33 (49%) | 12 (32%) | |
Yes, I have already taken it | 23 (34%) | 19 (50%) | ||
No, I will not take it | 12 (18%) | 7 (18%) |
April, Session 5 | N = 155 | N = 65 | ||
|---|---|---|---|---|
Who has the greatest knowledge in the engagement process? | Government officials, researchers | 30 (19%) | 5 (8%) | |
Doctors, nurses | 64 (41%) | 17 (26%) | ||
Community – you | 54 (35%) | 41 (63%) | ||
I don’t know | 7 (5%) | 2 (3%) | ||
When you visit your doctor or health care provider, how do you generally decide what treatment or medicines you will take for your condition? | The doctor knows best about what I need and prescribes it | 53 (34%) | 9 (14%) | |
The doctor explains all the options available to me, we discuss the options together and I make the decision based on what is right for me | 82 (53%) | 51 (79%) | ||
I request to take what my neighbor is taking because it is less expensive | 3 (2%) | 0 | ||
The decision is based on what my insurance company will cover | 13 (8%) | 3 (5%) | ||
Other | 3 (2%) | 2 (3%) | ||
Is getting health care or treatment for a health issue a problem for some Black communities? | Yes | 135 (88%) | 64 (98%) | |
No | 12 (8%) | 1 (2%) | ||
I don’t know | 6 (4%) | 0 |
May, Session 6 | N = 117 | N = 68 | ||
|---|---|---|---|---|
What are some commonly reported lingering health issues from having COVID-19? (Choose all that apply) | Anxiety | 60 (51%) | 46 (68%) | |
Fatigue | 86 (74%) | 56 (82%) | ||
Racing heartbeat | 49 (42%) | 42 (62%) | ||
Brain fog – problems with memory or concentration | 51 (44%) | 51 (75%) | ||
Shortness of breath | 99 (85%) | 57 (84%) | ||
Have you received the COVID-19 vaccine? (Choose only one) | Yes | 79 (68%) | 54 (81%) | |
No | 26 (22%) | 7 (11%) | ||
No access to the vaccine where I live | 6 (5%) | 0 | ||
Do not plan to take it | 1 (1%) | 1 (1%) | ||
Waiting for my second shot | 5 (4%) | 5 (7%) | ||
Any member of a community may participate in a PCORI research study or engagement award. (Choose only one) | True | 92 (79%) | 57 (84%) | |
False | 25 (21%) | 11 (16%) | ||
What are some examples of how you would like to get “involved” after being a part of these sessions? (Choose all that apply) | Help out with Community asthma, COVID outreach/education | 85 (77%) | 38 (69%) | |
Sign up to become an Allergy & Asthma Network Volunteer | 41 (37%) | 19 (35%) | ||
Sign up as an Allergy & Asthma Network Patient Advisor | 27 (25%) | 17 (31%) | ||
Join the Allergy & Asthma Network Asthma360 Research Registry | 49 (45%) | 17 (31%) | ||
Contact PCORI about becoming a PCORI Patient Advisor | 25 (23%) | 12 (22%) | ||
Sign up and participate in a Research focus group or study | 62 (56%) | 26 (47%) | ||
Contact Allergy & Asthma Network for more information about how to become more involved in helping others, telling my story, etc | 43 (39%) | 19 (35%) |