We conducted a literature review, utilizing a variety of resources that highlight differences in preferences among different demographics. We have displayed the results below. By clicking on the questions, you can see the way different demographic groups responded.
If you notice any gaps or have suggestions of questions and data to add, please share them with us here.
Click a question in the list below to jump to the corresponding data
More likely to learn about a study online through a patient advocate or blogger; (Source)
African Americans in Gen Z cite TikTok and Instagram (Source)
More likely to learn about a study online through a patient advocate or blogger; (Source)
African Americans in Gen X cite Facebook groups and forums; African Americans in Millennial generation cite TikTok and Instagram (Source)
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More likely to hear through their doctor (11%), family and friends (12%), and pharmacist (7%) compared to non-Hispanics (Source)
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Regardless of generation, all respondents are looking for a collection of convenience and access opportunities, such as support through transportation, childcare, virtual participation, compensation for involvement in the study, and better individual care (Source)
A doctor's recommendation, being sick and needing more options for treatment are motivators (Source)
a lead researcher of Native descent, having a study physician with experience treating American Indians/Alaska Natives, personal experience with the cancer being studied, family support for participation, and belief/hope that the study would result in new treatments (Source)
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Are not referred to the CT as much as patients that are 65-74, and 75+ (Source)
Are not referred to the CT as much as patients that are 65-74, and 75+ (Source)
65 and up: Patients' family or physicians advise against, lack of interest, problems with transportation (Source)
65 and up: Patients' family or physicians advise against, lack of interest, problems with transportation (Source)
65 and up: Patients' family or physicians advise against, lack of interest, problems with transportation (Source)
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Lack of knowledge surrounding clinical trial opportunities (Source)
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a lead researcher of Native descent, having a study physician with experience treating American Indians/Alaska Natives, personal experience with the cancer being studied, family support for participation, and belief/hope that the study would result in new treatments (Source)
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Believe that African Americans have been and continue to be treated differently than individuals of other races/ethnicities, Generation X continues to reference past and current mistreatment of African American patients due to racial inequities (Source)
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More likely to prefer hearing from an advocacy group, through posters/pamphlets in doctor’s office, and family/friends (Source)
More likely to prefer hearing from an advocacy group, through posters/pamphlets in doctor’s office, and family/friends (Source)
>65 Prefer learning through discussions with physician (71%) (Anderson et al, 2018) (Source)
>65 Prefer learning through discussions with physician (71%) (Anderson et al, 2018) (Source)
>65 Prefer learning through discussions with physician (71%) (Anderson et al, 2018) (Source)
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Black respondents were more likely to prefer hearing about a study online (55%) compared to White respondents (46%); Black respondents were more likely to prefer hearing about a study online through a patient advocate or blogger; social media cited as their "go-to" place to find information about clinical trial opportunities (Source)
Community healthcare leaders – doctors, dentists, and pharmacists (Source)
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Hispanic respondents were more likely to prefer hearing about a study online through a pharmaceutical company’s website (33%) or health insurance
website (30%) (Source)
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Black respondents’ trust in pharmaceutical
companies was more likely to be increased by
knowing that the company employed staff
that was diverse (32%) and that the company
included a diverse set of participants in their
clinical studies (52%) (Source)
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Hispanic respondents’ trust in pharmaceutical companies was more likely to be increased by knowing that the company employed staff that was diverse (22%)
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Perceived as very important (Source)
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Black respondents were significantly
more likely to report 'Very Willing to Participate' for all
types of flexible options
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Very important: Mobile app availability, Information specific for caregivers, Review and sign documents in |
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Very important: Mobile app availability, Information specific for caregivers, Review and sign documents in
electronic format, Supportive services, Information on health condition, Availability of clinic in local community, Some or all study visits conducted at home/office, Satisfaction survey (Source)
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'48% White respondents reported 'Very Willing' to go to a pharmacy (CVS, Walgreens, Boots, or other local pharmacies) for their study visits if they were to participate in a clinical research study. (Source)
'Very Comfortable' receiving care at home, the local supermarket, and the local pharmacy (Source)
'34% Asian respondents reported 'Very Willing' to go to a pharmacy (CVS, Walgreens, Boots, or other local pharmacies) for their study visits if they were to participate in a clinical research study. (Source)
'45% (All of other races) reported 'Very Willing' to go to a pharmacy (CVS, Walgreens, Boots, or other local pharmacies) for their study visits if they were to participate in a clinical research study. (Source)
'45% (All of other races) reported 'Very Willing' to go to a pharmacy (CVS, Walgreens, Boots, or other local pharmacies) for their study visits if they were to participate in a clinical research study. (Source)
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'Non-Hispanic respondents (48%) were more likely to report 'Very Willing' compared to Hispanic respondents (44%) to go to a pharmacy (CVS, Walgreens, Boots, or other local pharmacies) for their study visits if they were to participate in a clinical research study. (Source)
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Considered very important:
• Info about the sponsor
• Knowing other clinical trial
participants are diverse
• Knowing the staff conducting the study are diverse
• How confidentiality would be protected
• Knowing patients/caregivers had provided feedback on the study design
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More likely to find the consent form more difficult to understand (Source)
More likely to find the consent form more difficult to understand 21% (18-34yr olds), 16% (35-44yr olds), 8% (45-54yr olds), 8% (55-64yr olds) find consent forms somewhat or very difficult to understand. (Anderson et al, 2018) (Source)
6% (>65 yr olds) find consent forms somewhat or very difficult to understand. (Anderson et al, 2018) (Source)
6% (>65 yr olds) find consent forms somewhat or very difficult to understand. (Anderson et al, 2018) (Source)
6% (>65 yr olds) find consent forms somewhat or very difficult to understand. (Anderson et al, 2018) (Source)
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When asked what a signature on the consent form means, the majority of both the African American (84%) and Latino (85%) respondents agreed or strongly agreed that it meant they understood and agreed to participate. Sixty-two percent (62%) of African Americans and 56% of Latinos believed their signature meant that they could not sue the research institution, and 50% of African Americans and 56% of Latinos believed that the form protected the researcher and institution. Sixty-eight percent (68%) of African Americans and only 52% of Latinos thought that signing the consent form meant they were protected as research participants. (Quinn et al, 2012) (Source)
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When asked what a signature on the consent form means, the majority of both the African American (84%) and Latino (85%) respondents agreed or strongly agreed that it meant they understood and agreed to participate. Sixty-two percent (62%) of African Americans and 56% of Latinos believed their signature meant that they could not sue the research institution, and 50% of African Americans and 56% of Latinos believed that the form protected the researcher and institution. Sixty-eight percent (68%) of African Americans and only 52% of Latinos thought that signing the consent form meant they were protected as research participants. (Quinn et al, 2012) (Source)
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Visit rates for infants (<1 years) and older adults (65+) were higher than the rates for other age groups. (Source)
African Americans in Generation X (40-55 years old) visit a doctor at least 2x a year due to ailments and long-term diseases (Source)
Visit rates for infants (<1 years) and older adults (65+) were higher than the rates for other age groups. (Source)
Visit rates for infants (<1 years) and older adults (65+) were higher than the rates for other age groups. (Source)
Visit rates for infants (<1 years) and older adults (65+) were higher than the rates for other age groups. (Source)
White individuals visit doctors more frequency compared to other races, though have lower visit ratios for hematology and nephrology (Source)
At least 2x a year
Black individuals had low visit rates (compared to White individuals) to most specialties. (Source)
Asian/Pacific Islander individuals had lower visit ratios (compared to White individuals) (Source)
American Indian/Alaska Native individuals had lower visit ratios (compared to White individuals) (Source)
| Asian/Pacific Islander individuals had lower visit ratios (compared to White individuals) (Source) |
Hispanic individuals had lower visit ratios (compared to White individuals)
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CISCRP 2023 Perceptions and Insights Study. Accessed February 2024. https://www.ciscrp.org/services/research-services/perceptions-and-insights-study/
Getz E, Winley R, Joyner V, McDaniel D. “Generational Differences among African Americans, Their Experiences with the Healthcare System.” Applied Clinical Trials, 29 Feb. 2024, www.appliedclinicaltrialsonline.com/view/generational-differences-among-african-americans-their-experiences-with-the-healthcare-system.
Occa, A., Leip, A., Merritt, A. S., & Stapleton, J. L. (2022). Prevalence and correlates of invitation to participate in clinical trials among US adults. Preventive Medicine Reports, 26, 101742. https://doi.org/10.1016/j.pmedr.2022.101742
Forsat, N. D., Palmowski, A., Palmowski, Y., Boers, M., & Buttgereit, F. (2020). Recruitment and Retention of Older People in Clinical Research: A Systematic Literature Review. Journal of the American Geriatrics Society, 68(12), 2955–2963. https://doi.org/10.1111/jgs.16875
Ashman, J. J., Santo, L., & Okeyode, T. (2023). Characteristics of office-based physician visits by age, 2019. National Health Statistics Reports, 184. https://www.cdc.gov/nchs/data/nhsr/nhsr184.pdf
Cai, C., Gaffney, A., McGregor, A. (2021). Racial and ethnic disparities in outpatient visit rates across 29 specialties. JAMA Intern Med, 181(11): 1525-1527. https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2782019
Quinn, S. C., Garza, M. A., Butler, J., Fryer, C. S., Casper, E. T., Thomas, S. B., Barnard, D., & Kim, K. H. (2012). Improving informed consent with minority participants: results from researcher and community surveys. Journal of empirical research on human research ethics : JERHRE, 7(5), 44–55. https://doi.org/10.1525/jer.2012.7.5.44
Bergmann, F., Matzneller, P., Weber, M., Yeghiazaryan, L., Fuereder, T., Weber, T., & Zeitlinger, M. (2022). Perception of clinical research among patients and healthy volunteers of clinical trials. European journal of clinical pharmacology, 78(10), 1647–1655. https://doi.org/10.1007/s00228-022-03366-3
Wahlstrom-Edwards, L. & Hess, A.M. (2019). The patient perspective on clinical trials. Applied Clinical Trials, 28(3). https://www.appliedclinicaltrialsonline.com/view/patient-perspective-clinical-trials
Anderson, A., Borfitz, D., & Getz, K. (2018). Global Public Attitudes About Clinical Research and Patient Experiences With Clinical Trials. JAMA network open, 1(6), e182969. https://doi.org/10.1001/jamanetworkopen.2018.2969
Neumann, S., Bamford, A., Lithander, F. E., Tenison, E., & Henderson, E. J. (2021). Public attitudes to the use of remote data collection in clinical research. Contemporary clinical trials, 111, 106595. https://doi.org/10.1016/j.cct.2021.106595