Public and Patient Preferences to Inform Engagement Strategy

Public and Patient Preferences to Inform Your Engagement Strategy

How to Use This Resource

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. We encourage you to apply these insights to your engagement strategy, and we’ve developed an Enrollment/Retention Planning Guide to help.

If you notice any gaps or have suggestions of questions and data to add, please share them with us here.

Overview of Survey Questions

Click a question from the list below to jump to the corresponding data.

Where do you currently receive information about clinical trials?

What motivates you to participate in a clinical study?

What has kept you from participating in a clinical study?

What are your perceptions around health care safety?

Where do you prefer to receive information about clinical studies?

What is important for you to know about pharmaceutical companies that would instill trust?

Is site staff diversity important to you when considering study enrollment?

Are flexible options important to you (such as traditional, hybrid, mobile nurses, remote visits)?

What are some important clinical study features?

What are your preferences around clinical study visit settings?

What kind of information is desired before making a decision to participate in a clinical study?

What misconceptions or challenges do participants commonly report regarding the informed consent process?

At what frequency do you visit a doctor?

Where do you currently receive information about clinical trials?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

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)

We are working on obtaining this information

Sex

Female
Male
Non-binary

More likely to report hearing through advocacy groups (Source)

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

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

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

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

We are working on obtaining this information

What motivates you to participate in a clinical study?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

Family/friend recommendation (Source)

More likely to mention altruistic benefits and to advance science (Source)

More likely to mention altruistic benefits (Source)

Sex

Female
Male
Non-binary

Extensive follow up with medical staff giving study drug, altruism (Source)

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

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

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
Belief/hope that the study would result in new treatments (Source)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

Altruism
Helping family member by participating (Source)

To advance science (Source)

What has kept you from participating in a clinical study?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

Not referred to the clinical study as much as patients that are 65-74, and 75+ (Source)

Patients’ family or physicians advise against
Lack of interest
Problems with transportation (Source)

Patients’ family or physicians advise against
Lack of interest
Problems with transportation (Source)

Patients’ family or physicians advise against
Lack of interest
Problems with transportation (Source)

Sex

Female
Male
Non-binary

Logistics of participation
Trial info and materials
Lack of benefit to self
Concern for self autonomy (Source)

Doesn’t like trial design
Concern for safety,
Lack of trust (Source)

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

Lack of knowledge surrounding clinical trial opportunities (Source)

We are working on obtaining this information

Not having 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
Belief/hope that the study would result in new treatments (Source)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

We are working on obtaining this information

What are your perceptions around health care safety?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

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)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

We are working on obtaining this information

Where do you prefer to receive information about clinical studies?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

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

Prefer learning through discussions with physician (71%) (Source)

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

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)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

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)

We are working on obtaining this information

What is important for you to know about pharmaceutical companies that would instill trust?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

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)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

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

We are working on obtaining this information

Is site staff diversity important to you when considering study enrollment?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

Perceived as very important (Source)
Preference for African American physicians and medical offices with personnel who are African American (Source)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

Perceived as very important (Source)

We are working on obtaining this information

Are flexible options important to you (such as traditional, hybrid, mobile nurses, remote visits)

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

Black respondents were significantly more likely to report ‘Very Willing to Participate’ for all types of flexible options (Source)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

We are working on obtaining this information

What are some important clinical study features?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

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)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

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)

We are working on obtaining this information

What are your preferences around clinical study visit settings?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

48% of 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% of 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)

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

We are working on obtaining this information

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)

What kind of information is desired before making a decision to participate in a clinical study?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

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

(Source)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

We are working on obtaining this information

What misconceptions or challenges do participants commonly report regarding the informed consent process?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

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. (Source)

We are working on obtaining this information

Sex

Female
Male
Non-binary

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

We are working on obtaining this information

When asked what a signature on the consent form means, the majority of both the African American (84%) of respondents agreed or strongly agreed that it meant they understood and agreed to participate.
Sixty-two percent (62%) of African Americans believed their signature meant that they could not sue the research institution
50% of African Americans believed that the form protected the researcher and institution
Sixty-eight percent (68%) of African Americans thought that signing the consent form meant they were protected as research participants. (Source)

We are working on obtaining this information

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

When asked what a signature on the consent form means, the majority of Latino (85%) respondents agreed or strongly agreed that it meant they understood and agreed to participate.
56% of Latinos believed their signature meant that they could not sue the research institution
56% of Latinos believed that the form protected the researcher and institution.
52% of Latinos thought that signing the consent form meant they were protected as research participants. (Source)

We are working on obtaining this information

At what frequency do you visit a doctor?

Age

0-17 years
18-64 years
65-74 years
75-84 years
85+ years

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 65+ were higher than the rates for other age groups. (Source)

Sex

Female
Male
Non-binary

Female visit rates were higher than males. (Source)

We are working on obtaining this information

Race

White
Black/African American
Asian
Native American, Indian, or Alaskan Native
Native Hawaiian/ Pacific Islander

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)

Ethnicity

Hispanic or Latino
Not Hispanic or Latino

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

We are working on obtaining this information

References

CISCRP 2023 Perceptions and Insights Study. Accessed February 2024. https://www.ciscrp.org/professional-services/perceptions-and-insights-studieshttps://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

ClinicalKey. (2024). Clinicalkey.com. https://www.clinicalkey.com/#!/content/playContent/1-s2.0-S2451865424000309?returnurl=https:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS2451865424000309%3Fshowall%3Dtrue&referrer=

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

https://pmc.ncbi.nlm.nih.gov/articles/PMC4357359/#R33

https://youtu.be/tucm0wYLxzs

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0081770#s3

https://pmc.ncbi.nlm.nih.gov/articles/PMC4156927/#:~:text=A%20doctor’s%20recommendation%2C%20being%20sick,to%20prevent%20clinical%20trial%20participation.

https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-14-1156#:~:text=The%20potential%20of%20overcoming%20difficulties,motivating%20factor%20for%20study%20participation.

https://pubmed.ncbi.nlm.nih.gov/18507276/

https://www.pharmavoice.com/news/101/616347/