A total of 323 patients were approached to participate, of whom 214 provided consent and 200 completed the survey (Figure A1). Study sample characteristics are provided in Table 1. Over half of the participants were male (54%) with a mean age of 61 years. Most participants had clinical evidence of cirrhosis (55%) and reported prior participation in research (71%). Interestingly, 18% of participants recruited from a cohort study reported they had never participated in a health/medical research study.
Study Flowchart. †Patients attempted to recruit include those who self-identified as Black or African-American and (1) had participated in the PROP UP study and provided verbal or written consent to be contacted about future research studies or (2) were approached by research staff at an outpatient liver clinic.
Willingness to Participate in Different Types of Health/Medical Research Studies
Participants were generally willing to participate in health/medical research (Table 2). Participants were more willing to participate in research involving certain scenarios or procedures, including as follows: a disease or condition they have; questionnaires; interviews; and blood samples. They were less willing to participate in randomized controlled trials of medical treatments (versus placebo) or those which involved an implantable medical device.
Participants perceived many benefits to participating in health/medical research (Mean [95% CI] = 4.38 [4.31, 4.45]). Participants agreed that research benefits future generations (Mean [95% CI] = 4.63 [4.54, 4.71]) and leads to better medical care in general (Mean [95% CI] = 4.63 [4.54, 4.71]). Compared with other items, participants had lower agreement that research was enjoyable (Mean [95% CI] = 3.88 [3.76, 4.00]) and allowed them to socialize (Mean [95% CI] = 3.86 [3.71, 4.00]).
Participants on average had lower perceived barriers (Mean [95% CI] = 2.68 [2.58, 2.77]). The greatest reported barriers included uncertainty about whether they would receive treatment or placebo (Mean [95% CI] = 3.20 [3.03, 3.37]) and risk of unknown side effects (Mean [95% CI] = 3.18 [3.00, 3.35]). Compared with other items, participants reported lower agreement that distrust of researchers (Mean [95% CI] = 2.19 [2.05, 2.32]) and distrust of scientists (Mean [95% CI] = 2.20 [2.07, 2.33]) were barriers to participation.
Participants' trust in their doctors (hepatologists) was quite high (Mean [95% CI] = 4.10 [4.03, 4.16]). Participants agreed that they could ask their doctors any questions (Mean [95% CI] = 4.54 [4.45, 4.62]), and their doctors would explain things about their liver disease in a way they could understand (Mean [95% CI] = 4.51 [4.43, 4.59]). Relative to other items, participants reported lower agreement that doctors treat people of their racial group the same as other groups (Mean [95% CI] = 3.56 [3.40, 3.71]).
Participants rated their understanding of health/medical research between 'somewhat well' and 'pretty well' (Mean [95% CI] = 3.65 [3.51, 3.79]). When asked true/false questions to evaluate objective knowledge of clinical trials, participants, on average, provided correct answers to 74% of the questions (Table 3). Most participants were aware of participation voluntariness, informed consent prior to participation and the inability to be enrolled without their knowledge or consent. Participants had less knowledge about the purpose of randomization and randomized controlled trials.
Multivariable Median Regression Model of Factors Associated With WTP
As the distribution of the WTP score variable was somewhat left skewed (Figure 1), the median of the WTP score was judged to be a better indicator of central tendency compared with the mean, and a multivariable median regression model was selected and results are shown in Table 4. Subjective knowledge of health/medical research had a statistically significant association with WTP. All other relationships were inconclusive at α < 0.05.
Following sensitivity analyses (detailed in Appendix 1), a final multivariable median regression model identified subjective knowledge of health/medical research and perceived benefits of research participation as positively associated with WTP (Table 5). The results of sensitivity analyses instilled a greater level of confidence in our main result: patients' subjective knowledge of health/medical research and perceived benefits of research participation are independently, strongly associated with WTP.
Qualitative Feedback: Strategies to Increase Participation in Health/Medical Research
Through the open-ended question, participants described strategies to increase participation of Black community members in research. Participants identified a need for (1) greater community outreach (n = 82, 42%); (2) clear, honest explanations of research activities (n = 46, 23%); (3) emphasizing the research participation benefits (n = 41, 21%); and (4) provider communication about research opportunities (n = 35, 18%).
Some participants cited research abuses, such as the Tuskegee study and expressed negative sentiments towards doctors conducting research. Some participants indicated Black community members do not feel comfortable or welcome in healthcare settings. Participants offered non-healthcare avenues for outreach/engagement, including community centres, senior centres, churches, radio/TV advertisements and social media. Participants said:
Make information about research studies available in churches and community centers…. I haven't seen anybody at the senior center… and seniors could use the information to tell their children or other people they know.
Put it on TV, Facebook, YouTube, or Instagram and you will get a lot of response. Using social media would be a big help because everybody always has their phone in their hands.
To improve outreach/engagement, some participants suggested research studies should be led by and employ more Black researchers. Participants said:
When a person comes into the office to talk to patients, make sure that they are individual and a person of African-American descent.
Person in charge of the study should be Black so that participants can identify with them.
Regarding the suggestion that doctors and research professionals should strive to use clear, honest language when explaining research, participants said:
Be more forthcoming. Lots of people are scared of things. They think about the [Tuskegee] study… Explain everything that you're doing. People can get to imagining that bad things are happening if they don't have all the information. Keep it clear.
Being upfront about the risks and benefits. Tell people upfront that there are side effects.
Participants felt researchers should highlight research participation benefits, such as helping the community and future generations, receiving compensation and obtaining free medical care. Participants said:
Offer fair compensation. Let participant know how research can help the community and the medical benefits they can get for being in the study.
Because of the reluctance [to participate], there needs to be some kind of incentive like financial benefits, life-saving [health benefits], or helping a loved one.
Some participants believed healthcare providers should play an active role in research opportunity awareness raising. A participant said:
Some people don't like to ask questions. The doctors need to ask more questions. They need to start the conversation with patients… Building that trust and communication between patients and doctors.
J Viral Hepat. 2021;28(7):982-993. © 2021 Blackwell Publishing