Public and Patient Preferences to Inform DAP Strategies

How to Use This Resource

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Overview of Survey Questions

Click a question in the list below to jump to the corresponding data

Where do these groups currently receive information about clinical trials?

Age

More likely to learn about a study online through a patient advocate or blogger; African Americans in Gen Z cite TikTok and Instagram

More likely to learn about a study online through a patient advocate or blogger; African Americans in Gen X cite Facebook groups and forums; African Americans in Millennial generation cite TikTok and Instagram

N/A

N/A

N/A

Sex

More likely to report hearing through advocacy groups

N/A

N/A

Race

N/A

More likely to learn about a study online through a patient advocate or blogger

More likely to learn about a study online through a patient advocate or blogger

N/A

N/A

Ethnicity

More likely to hear through their doctor (11%), family and friends (12%), and pharmacist (7%) compared to non-Hispanics

N/A

Motivations to participate

Age

family/friend recommendation

family/friend recommendation

More likely to mention altruistic benefits and to advance science

More likely to mention altruistic benefits and to advance science

More likely to
mention altruistic benefits

Sex

Extensive follow up with medical staff giving study drug, altruism

The potential of overcoming difficulties in accessing medical care, A majority of participants cited collaborating in the development of a product

N/A

Race

N/A

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

A doctor's recommendation, being sick and needing more options for treatment are motivators

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

N/A

Ethnicity

Altruism: helping family member by participating

to advance science

Reasons shared why group has not participated

Age

Are not referred to the CT as much as patients that are 65-74, and 75+

Are not referred to the CT as much as patients that are 65-74, and 75+

65 and up: Patients' family or physicians advise against, lack of interest, problems with transportation

65 and up: Patients' family or physicians advise against, lack of interest, problems with transportation

65 and up: Patients' family or physicians advise against, lack of interest, problems with transportation

Sex

Logistics of participation, trial info and materials, benefit to self, concern for self autonomy

Doesn't like trial design, Altruism: research and knowledge, concern for safety, trust

N/A

Race

N/A

Lack of knowledge surrounding clinical trial opportunities

N/A

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

N/A

Ethnicity

N/A

N/A

Perceived health care safety

Age

N/A

N/A

N/A

N/A

N/A

Sex

N/A

N/A

N/A

Race

N/A

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

N/A

N/A

N/A

Ethnicity

N/A

N/A

Preference to receive information about clinical trials

Age

More likely to prefer hearing from an advocacy group, through posters/pamphlets in doctor’s office, and family/friends

More likely to prefer hearing from an advocacy group, through posters/pamphlets in doctor’s office, and family/friends

>65 Prefer learning through discussions with physician (71%) (Anderson et al, 2018)

>65 Prefer learning through discussions with physician (71%) (Anderson et al, 2018)

>65 Prefer learning through discussions with physician (71%) (Anderson et al, 2018)

Sex

N/A

N/A

N/A

Race

N/A

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

Community healthcare leaders – doctors, dentists, and pharmacists

N/A

N/A

Ethnicity

Hispanic respondents were more likely to prefer hearing about a study online through a pharmaceutical company’s website (33%) or health insurance
website (30%)

N/A

How to increase trust in the pharmaceutical enterprise

Age

N/A

N/A

N/A

N/A

N/A

Sex

N/A

N/A

N/A

Race

N/A

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%)

N/A

N/A

N/A

Ethnicity

Hispanic respondents’ trust in pharmaceutical companies was more likely to be increased by knowing that the company employed staff that was diverse (22%)

N/A

Perceived importance of diverse site staff when deciding to enroll

Age

N/A

N/A

N/A

N/A

N/A

Sex

N/A

N/A

N/A

Race

N/A

Perceived as very important, preference for African American physicians and medical offices with personnel who are African American

N/A

N/A

N/A

Ethnicity

Perceived as very important

N/A

Perceived importance of the following flexible options: Traditional, Hybrid, Mobile Nurse, Remote

Age

N/A

N/A

N/A

N/A

N/A

Sex

N/A

N/A

N/A

Race

N/A

Black respondents were significantly
more likely to report 'Very Willing to Participate' for all
types of flexible options

N/A

N/A

N/A

Ethnicity

N/A

N/A

Important clinical study features

Age

N/A

N/A

N/A

N/A

N/A

Sex

N/A

N/A

N/A

Race

N/A

Very important: Mobile app availability, Information specific for caregivers, Review and sign documents in

N/A

N/A

N/A

Ethnicity

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

N/A

Preference of clinical study visit setting

Age

N/A

N/A

N/A

N/A

N/A

Sex

N/A

N/A

N/A

Race

'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.

'Very Comfortable' receiving care at home, the local supermarket, and the local pharmacy

'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.

'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.

'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.

Ethnicity

N/A

'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.

Information desired before making decision to participate

Age

N/A

N/A

N/A

N/A

N/A

Sex

N/A

N/A

N/A

Race

N/A

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

N/A

N/A

N/A

Ethnicity

N/A

N/A

Understanding Informed Consent Form

Age

More likely to find the consent form more difficult to understand

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)

6% (>65 yr olds) find consent forms somewhat or very difficult to understand. (Anderson et al, 2018)

6% (>65 yr olds) find consent forms somewhat or very difficult to understand. (Anderson et al, 2018)

6% (>65 yr olds) find consent forms somewhat or very difficult to understand. (Anderson et al, 2018)

Sex

N/A

N/A

N/A

Race

N/A

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)

N/A

N/A

N/A

Ethnicity

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)

N/A

Frequency of visiting a doctor

Age

Visit rates for infants (<1 years) and older adults (65+) were higher than the rates for other age groups.

African Americans in Generation X (40-55 years old) visit a doctor at least 2x a year due to ailments and long-term diseases

Visit rates for infants (<1 years) and older adults (65+) were higher than the rates for other age groups.

Visit rates for infants (<1 years) and older adults (65+) were higher than the rates for other age groups.

Visit rates for infants (<1 years) and older adults (65+) were higher than the rates for other age groups.

Sex

Female visit rates were higher than males

N/A

N/A

Race

White individuals visit doctors more frequency compared to other races, though have lower visit ratios for hematology and nephrology

At least 2x a year
Black individuals had low visit rates (compared to White individuals) to most specialties.

Asian/Pacific Islander individuals had lower visit ratios (compared to White individuals)

American Indian/Alaska Native individuals had lower visit ratios (compared to White individuals)

Asian/Pacific Islander individuals had lower visit ratios (compared to White individuals)
Ethnicity

Hispanic individuals had lower visit ratios (compared to White individuals)

N/A