Correspondence: Mordecai Machazire, University of Saskatchewan MPH Program
To better understand clinical trial perceptions among Canada's racialized and marginalized populations, we introduced a foundational categorization, dividing participants into 'informed', 'uninformed', or 'mixed understanding' groups. This categorization facilitated a comprehensive analysis of barriers, facilitators, and other influential factors, uncovering distinct pathways among these groups. Notably, in the realm of information sourcing, the informed group predominantly relied on family members, while the uninformed turned to word of mouth, with doctors ranking surprisingly low. Rather than suggesting a shift in information sources due to concerns about the low ranking of doctors, our recommendations emphasize the importance of understanding and bolstering these naturally preferred pathways. Furthermore, we provide a report to each agency associated with clinical trials, offering them a customized overview of the survey results pertinent to their operations. This nuanced approach spans all evaluated categories, spotlighting the diverse experiences and perceptions within these communities. It sets the stage for devising tailored, culturally-sensitive outreach strategies to enhance inclusivity in Canadian clinical trials.
Keywords: clinical trials, health equity, racialized communities, marginalized populations, patient engagement, Canada, research participation, Belmont Report
Clinical trials are essential for advancing cancer research and creating new standards of care. However, racialized and marginalized communities remain underrepresented, raising concerns about the generalizability of the findings (Hussain-Gambles et al., 2004). Specifically, the effectiveness and safety of a drug or therapy in one population does not necessarily mean that it will be the same in other populations. This report aims to illuminate multifaceted perceptions, motivations, and barriers related to clinical trial knowledge and participation among racialized and marginalized communities.
We employed a categorized analytical approach, classifying participants as Informed, Uninformed, or Mixed Understanding based on foundational awareness responses grounded in the Belmont Report's ethical guidelines (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). This technique allowed normalizing sample sizes and illuminating variances in motivations, behaviors, and preferences between groups.
The subcategorized survey framework methodically built understanding across four segments - Foundational Awareness, Decision Dynamics, Action & Outcome, and Demographic Insights. Limitations exist regarding sample size and selection bias. However, meaningful patterns emerged highlighting diverse pathways based on knowledge levels, age, region, ethnicity, and cultural beliefs.
Tailored recommendations were formulated for six specialized interest groups by matching relevant results data to each. This upholds the report constitution emphasizing respect for multifaceted community choices. The insights can shape policies, practices, and research to foster trust and engage marginalized voices.
Fundamentally, the approach represents a paradigm shift - from homogenizing views to embracing uniquely illuminated experiences. It offers a roadmap for stakeholder groups to catalyze meaningful change, not through unilateral solutions but customized strategies reflecting the richness of attitudes and awareness across communities.
By privileging illumination over hierarchies, participation over assumptions, and understanding over judgments, this report provides the compass to guide inclusion in clinical research. It sets the stage for trials that genuinely resonate with Canada's diverse populace.
The subsequent sections detail the methodology, results, discussion, and recommendations. Collectively, they demonstrate how principles of diversity, equality of voice, and customization can reveal pathways to unite science and society for more impactful and representative clinical trials.
The purpose of this survey is to understand the level of knowledge and experiences of individuals from diverse populations that are typically underrepresented in cancer clinical trials. By comprehending these distinct perspectives, we aim to develop customized strategies to increase their knowledge and participation. Our ultimate aspiration is to ensure these communities are well-informed, fostering an environment where they can confidently make choices to participate in clinical trials.
To address this gap, our study employs an innovative methodology, categorizing participants into 'informed', 'uninformed', or 'mixed understanding' groups based on their responses to statements grounded in ethical principles from the Belmont Report. This structure facilitates comparative analysis to uncover nuanced insights across groups, moving beyond unilateral perspectives.
Critically, these categories do not denote hierarchies or value judgements of being "right" or "wrong". Rather, they serve as frameworks to understand variances in awareness, attitudes, and behaviors. The intent is to respect diverse voices equally while allowing customized approaches tailored to each group's distinct needs and pathways.
Targeting individuals aged 18 and above, we aim to comprehensively elucidate the multidimensional factors influencing clinical trial perceptions among these cohorts. Ultimately, our ambition is to elevate awareness, foreground ethical considerations, and boost engagement across communities.
Our survey was strategically disseminated with a focused outreach to racialized and marginalized communities in Canada. An extensive email outreach was undertaken, targeting numerous community organizations, advocacy groups, health agencies, and charitable societies that have established connections with racialized and marginalized communities. The organizations include, but are not limited to:
The email detailed our initiative's objective, its alignment with the mandate of these organizations, and various ways they could contribute to our cause – from sharing the survey link on their digital platforms to leveraging their offline networks. A comprehensive list of organizations and the actual email content sent can be found in the supplementary section. For organizations that did not initially respond to our email outreach, a follow-up phone call was made to ensure the survey reached the intended audience. The survey was accessible to respondents from 30th June to 26th July.
The initial survey population consisted of 200 participants. To focus the analysis specifically on racialized and marginalized communities, respondents identifying solely as White were excluded (n=23). Additionally, a new mixed race category was created by recoding those who selected multiple races into a single mixed race group.
A pivotal aspect of the methodology was categorizing participants into one of three groups based on their understanding of clinical trials:
This grouping was based on responses to three statements grounded in ethical principles from the Belmont Report, which has been adopted by Health Canada. The statements aimed to assess understanding of concepts like trial safety, voluntary participation, and the role of physician recommendation.
The Informed Group responded accurately to all three statements, displaying comprehension of clinical trials. In contrast, the Uninformed Group lacked clarity or held misconceptions. The Mixed Understanding Group exhibited a blend of accurate knowledge and misunderstandings.
It is critical to note that awareness of ethical principles alone does not necessarily translate to informed participation. However, grouping participants by their foundational understanding served to normalize sample sizes for analysis.
After filtering, any remaining participants who did not clearly fit into one of the three groups were excluded (n=9). The final participant count for analysis was n=177, with 28 in the Informed Group, 32 in the Uninformed Group, and 117 in the Mixed Understanding Group.
The survey questions were designed to assess knowledge, attitudes, and experiences with clinical trials. After data cleaning, the questions were divided into distinct categories and subcategories for structured analysis:
Category I - Foundational Awareness & Personal Context
Subsections: A-Clinical Knowledge Reconciliation, B-Background and History, C-First Contact Origins
Category II - Decision-Making Dynamics
Subsections: A-Trustworthy Information Channels, B-Considerations for Participation, C-Facilitators for Participation, D-Barriers to Participation
Category III - Action & Outcome
Subsections: A-Clinical Trial Outcomes, B-Determinants of Early Introduction
Category IV - Socio-Demographic Insights
Subsections: A-Gender-Based Perspectives, B-Age-Driven Knowledge, C-Regional Differences, D-Racial & Ethnic Disparities, E-Cultural & Religious Influences
This categorization methodology was preferred over extensive individual analysis by race for several reasons. Firstly, performing detailed statistical analysis for each race would have far exceeded the practicum timeframe. Additionally, meaningful extrapolation requires minimum sample size thresholds which may not have been feasible for every racial group.
Most importantly, the categorization allowed for illuminating differences in knowledge and perceptions between groups. This provided a foundational first step in identifying gaps and tailoring recommendations based on understanding levels. Approaching the data through the lens of these groups offered actionable insights within the practicum constraints.
Certain survey questions were excluded from the final analysis. Question 7 on personal cancer experiences offered contextual insights but was not directly relevant to the focus areas. Questions 10, 18 and 19 contained open-ended components that presented analysis challenges and were thus omitted.
To translate insights into tangible strategies, six interest groups were identified as benefiting from the survey findings:
The recommendations were tailored for each group based on their potential utility.
The recommendations emerged from correlating the survey results through the lens of the three understanding levels with the goals of the six interest groups. This allowed customized, actionable recommendations grounded in the data.
| Report Categories and Subcategories | Informed | Uninformed | Mixed Understanding |
|---|---|---|---|
| I.A. Clinical Knowledge Reconciliation | 43.75% were very familiar | 18.18% were very familiar | 25.76% were very familiar |
| I.B. Background and History | 46.67% had prior knowledge of clinical trials before an actual experience of cancer either personally, as survivor or caregiver | 76.67% did not have prior knowledge of clinical trials before an actual experience of cancer either personally, as survivor or caregiver | 57.94% had prior knowledge of clinical trials before an actual experience of cancer either personally, as survivor or caregiver |
| I.C. First Contact Origins | 34.38% first heard from doctors | 33.33% first heard from advocacy groups | 24.24% first heard from advocacy groups |
| II.A. Trustworthy Information Channels | Ranked family members highest | Ranked word of mouth highest | Doctors had lower trust rankings |
| II.B. Considerations for Participation | Top concern was time commitment | Emphasized complex enrollment and lack of diversity | Top concern was time commitment |
| II.C. Facilitators for Participation | Valued autonomy and logistical support | Leaned towards external validation | Sought balance between advice and support |
| II.D. Barriers to Participation | Top barrier was time commitment | Highlighted enrollment complexity and diversity concerns | Top barrier was time commitment |
| III.A. Clinical Trial Outcomes | 50% participation rate | 18.18% participation rate | 27.04% participation rate |
| III.B. Determinants of Early Introduction | 44% had early introduction | 13.64% had early introduction | 11% had early introduction |
| IV.A. Gender-Based Perspectives | |||
| IV.B. Age-Driven Knowledge | Younger 18-24 and older age 65+ groups more informed | ||
| IV.C. Regional Differences | Higher informed rates in western provinces - BC | Higher uninformed rate in Yukon | |
| IV.D. Racial & Ethnic Disparities | Latin American group had high uninformed rate | ||
| IV.E. Cultural & Religious Influences | 33.33% rated beliefs as extremely important | Cultural beliefs more prominent |
A. Clinical Knowledge Reconciliation
- 43.75% of the Informed Group claimed to be 'Very familiar' with clinical trials compared to 18.18% of the Uninformed Group and 25.76% of the Mixed Understanding Group.
- Despite being the most informed, 21.87% of the Informed Group never considered participating in a clinical trial.
B. Background and History
- 76.67% of the Uninformed Group did not have prior knowledge of clinical trials before an actual experience of cancer either personally, as survivor or caregiver compared to 46.67% of Informed Group and 57.94% of Mixed Understanding Group.
C. First Contact Origins
- 34.38% of the Informed Group first heard about trials from their doctor/healthcare team.
- For the Uninformed Group, the top source was advocacy/non-profit organizations at 33.33%.
- The Mixed Understanding Group primarily heard about trials from advocacy/non-profit organizations at 24.24%.
A. Trustworthy Information Channels
- The Uninformed Group ranked "Word of mouth" highest while the Informed Group ranked "Family members" highest as trusted information sources.
- Doctors were surprisingly low in trust rankings across groups.
B. Considerations for Participation
- "Time commitment" was the top concern across all groups.
- The Uninformed Group uniquely emphasized "Complex enrollment" and "Lack of cultural diversity in the medical team".
C. Facilitators for Participation
- The Informed Group valued autonomy and logistical support. The Uninformed Group leaned towards external validation. The Mixed Understanding Group sought a balance between professional advice and personal support.
- Across all groups, doctor recommendations were a significant influencer in considering participation.
D. Barriers to Participation
- "Time commitment" was the top barrier across all groups.
- The Informed and Mixed Understanding groups emphasized medical jargon as a barrier, while the Uninformed Group highlighted enrollment complexity and diversity concerns.
A. Clinical Trial Outcomes
- The Informed Group had the highest participation rate at 50% compared to 18.18% for the Uninformed Group and 27.04% for the Mixed Understanding Group.
- Despite being uninformed, 18.18% of the Uninformed Group still participated in clinical trials.
B. Determinants of Early Introduction
- The Informed Group had the highest percentage (44%) introduced early alongside standard treatments, compared to 13.64% of Uninformed Group and 11% of Mixed Understanding Group.
A. Gender-Based Perspectives
- Notable male dominance (71.93%) in survey participation.
B. Age-Driven Knowledge
- Younger (18-24) and older (65+) age groups were more informed and less uninformed compared to middle-aged groups.
C. Regional Differences
- Western provinces like British Columbia had higher informed rates (22.22% for Informed Group) and lower uninformed rates.
- Yukon showed high uninformed percentage (16.13% for Uninformed Group).
D. Racial & Ethnic Disparities
- 'Latin American' group had a higher rate of being uninformed.
E. Cultural & Religious Influences
- Those rating cultural/religious beliefs as "Extremely important" tended to be more informed.
This report's categorization methodology and subsequent analysis were driven by the core objective to illuminate varied perspectives, experiences, and pathways related to clinical trials across diverse communities. The intention was not to evaluate levels of awareness or knowledge as "right" or "wrong". Rather, the purpose was to gain a more profound understanding of the multifaceted factors influencing how different groups perceive, engage with, and make decisions regarding clinical trials.
To accomplish this, participants were categorized into one of three groups – Informed, Uninformed, or Mixed Understanding – based on responses to three statements grounded in ethical principles outlined in the Belmont Report. This Report, crafted in 1978 and adopted by Health Canada, puts forth ethical guidelines for human subject research centered on respect for persons, beneficence, and justice (Health Canada, n.d.). The three statements aimed to assess comprehension of concepts core to ethical clinical trials, including safety, voluntary participation, and the non-necessity of physician referral.
Those responding accurately formed the Informed Group. Those expressing inaccuracies or uncertainties became the Uninformed Group.Responses with both accurate and inaccurate elements constituted the Mixed Understanding Group. This grouping provided manageable sample sizes for comparative analysis. More importantly, it facilitated nuanced explorations of how various factors – from motivations and barriers to information sources and outcomes – manifest distinctly across groups with fundamentally different baseline awareness.
Anchoring the methodology in the Belmont Report's ethical principles allowed the subsequent analyses to be undertaken through a lens prioritizing illuminating experiential insights rather than judging knowledge levels. This aligned with the report's constitution emphasizing respect for diverse perspectives and customized recommendations tailored to revealed needs.
The informed/uninformed/mixed understanding categories represent an intentional departure from conventional groupings focused on race, ethnicity, or aggregate demographic data. The rationale behind this alternative approach acknowledges that while racial or cultural identities shape perspectives, categorizations based on these alone often average out nuanced differences in motivations, barriers, and behaviors related to clinical trials. Solely racial groupings also introduce analytical challenges regarding statistical significance requirements and small sample sizes.
In contrast, by grouping participants according to their foundational awareness and analyzing using classifications like Trusted Information Sources and Barriers to Participation, more granular insights surfaced. For instance, the Informed Group's highest trusted source being family members diverged from the Uninformed Group's emphasis on community narratives. Such nuances would likely get obscured in a broadly racial analysis. But they hold significance in tailoring communication strategies.
Additionally, the methodology does not intend to definitively quantify knowledge levels. The monikers of Informed, Uninformed, and Mixed Understanding serve as frameworks to extract insights. They could have been called anything. The utility lies in providing a structured approach to discern variances in awareness and illuminate diverse pathways. This permits identifying starting points for targeted outreach.
For example, focus groups differentiated by these categories rather than treated as homogenous racial cohorts could elicit more multidimensional feedback. Those displaying certainty in inaccurate beliefs require different engagement than those exhibiting ambivalence and openness to learn. A singular approach risks alienating some voices.
The survey analysis framework followed a thoughtful progression through four core categories, each with subsections designed to provide multidimensional insights into clinical trial perceptions, awareness, and behaviors.
Category I centered on Foundational Awareness and Personal Context with three subsections:
Category II honed in on Decision-Making Dynamics using four subsections:
Category III addressed tangible Actions and Outcomes through two subsections:
Category IV took a wide-angle Sociodemographic View through five subsections:
Our research endeavor illuminated the dynamic interplay between knowledge levels, perceptions, and decision-making dynamics in clinical trials across various participant groupings. The utility of our categorization methodology, distinct from traditional demographic classifications, underscores the necessity to understand knowledge and perception as multidimensional constructs. While racial and ethnic identities are undeniably pivotal in molding perspectives, understanding clinical trials from the lens of foundational awareness allowed us to gain richer insights and bring to light intricate nuances that could get overshadowed otherwise.
The trusted information sources, motivations, barriers, and actions were all found to vary significantly, indicating a tailored approach is needed for more effective communication and engagement. The Belmont Report's ethical principles, grounding our research, reiterate the importance of respecting every individual's unique position in the intricate web of clinical trials awareness.
While it's evident that the framework provided unprecedented insights, there's an acknowledgment that no categorization is without its limitations. However, with the insights gained, stakeholders can cultivate more informed strategies to improve outreach, awareness, and participation in clinical trials. In essence, our research advocates for a shift from broad-brush, one-size-fits-all strategies towards more nuanced, individualized approaches, appreciating the complexities of perspectives and experiences in the realm of clinical trials. Future research might further validate and refine our methodology, ensuring that every individual's voice and perspective is rightfully acknowledged and addressed in the constantly evolving clinical trials landscape.
This report's methodology sought to illuminate multifaceted perspectives on clinical trials by categorizing participants as Informed, Uninformed, or Mixed Understanding based on foundational awareness of core ethical principles. The subsequent phased analysis approach provided insights into the diverse experiences and decision pathways across these groups.
The Objectives established the framework centered on inclusion, comprehension, and ethical considerations in clinical research. The Results revealed variance across groups regarding influences like motivations, barriers, information sources, and participation rates.
Both the Key Findings and Methods reaffirmed appreciating outcomes equally, not privileging any one pathway. The Discussion reiterated the non-hierarchical constitution guiding interpretation of differences without value judgements.
Tailored Recommendations were formulated to engage specialized interest groups by highlighting the most pertinent results data for each. The intent was education and alignment, not attempting to alter community preferences.
While limitations exist regarding sample size, selection bias, and self-reported data, the methodology illuminated crucial nuances. It fulfilled the primary aim of crafting customized strategies reflecting the multifaceted fabric of attitudes, behaviors, and awareness about clinical trials across diverse communities.
Fundamentally, the approach sought to shift the lens from a unilateral perspective to one embracing varied forces shaping knowledge and perceptions. The insights can inform policies, practices, and future research to foster meaningful engagement across groups.
By upholding principles of diversity, customization, and equality of voice, this report lays the groundwork for uniting science and society. It offers a compass to guide understanding and build trust. Most importantly, it sets the stage for clinical trials where all communities see themselves represented.
| Categories & Subcategories | Medical Professionals | Health Canada | Advocacy Groups | Nonprofit Organizations | Pharmaceutical Entities | Academic Researchers |
|---|---|---|---|---|---|---|
| I.A. Clinical Knowledge Reconciliation | Investigate patient knowledge and bridge gaps - 43.75% of informed were very familiar | Guide public education campaigns - No participants never heard of trials | Tailor outreach based on knowledge levels - 25.76% of mixed group somewhat familiar | Refine educational programs based on familiarity - 18.18% of uninformed were very familiar | Inform communication strategies - 21.87% of informed never considered participating | Assess effectiveness of awareness efforts - No participants never heard of trials |
| I.B. Background and History | Introduce trials early, before diagnosis - 46.67% of informed were unaware before cancer diagnosis | Public education before cancer experiences - 76.67% of uninformed were unaware before diagnosis | Advocate early education on trials - 57.94% of mixed group were unaware before diagnosis | Early introduction campaigns - 46.67% of informed were unaware before diagnosis | Collaborate with doctors for early education - 76.67% of uninformed were unaware before diagnosis | Consider outreach before diagnoses - 46.67% of informed were unaware before diagnosis |
| I.C. First Contact Origins | Key information source for informed patients - 34.38% of informed first heard from doctors | Collaborate with advocacy groups - 24.24% of mixed group heard from advocacy groups | Vital role in informing uninformed groups - 33.33% of uninformed heard from advocacy groups | Strengthen collaborations with doctors - 33.33% of uninformed heard from advocacy groups | Support awareness via advocacy groups - 34.38% of informed heard from doctors | Share findings through advocacy groups - 24.24% of mixed group heard from advocacy groups |
| II.A. Trustworthy Information Channels | Cultivate patient trust and relationships - Doctors had lower trust rankings | Assess communication strategies - Uninformed group ranked word of mouth highest | Advocate for clearer communication - Informed group ranked family members highest | Community collaborations to spread information - Doctors had lower trust rankings | Improve transparency in communication - Doctors had lower trust rankings | Make findings accessible through trusted channels - Doctors had lower trust rankings |
| II.B. Considerations for Participation | Discuss trials as part of treatment - "Time commitment" was top concern across groups | Ensure patient safety and transparency - Uninformed group emphasized "complex enrollment" | Advocate for inclusivity and representation - Uninformed group emphasized "lack of diversity in teams" | Educate public and address concerns - "Time commitment" was top concern across groups | Ensure rigorous training for trial teams - Uninformed group emphasized "complex enrollment" | Prioritize transparent communication with participants - "Time commitment" was top concern across groups |
| II.C. Facilitators for Participation | Doctor recommendations are influential - Mixed group ranked doctor recommendations 1st | Streamline regulatory processes - Uninformed group motivated by access to new treatments | Represent marginalized community perspectives - Informed group valued autonomy and support | Highlight societal benefits of participation - Informed group valued autonomy and support | Transparently present data on new treatments - Uninformed group motivated by access to new treatments | Explore innovative treatments for unmet needs - Mixed group sought balance between advice and support |
| II.D. Barriers to Participation | Simplify complex terms for patients - Informed and mixed groups noted medical jargon as a barrier | Stricter privacy regulations - Informed group had concerns about privacy | Lobby for barrier removal - Uninformed group concerned about enrollment complexity | Address reservations through education - Medical jargon was a common barrier | Improve transparency about risks/benefits - Uninformed concerned about potential side effects | Simplify trial enrollment processes - Uninformed concerned about enrollment complexity |
| III.A. Clinical Trial Outcomes | Tailor approach based on motivations and barriers - 50% of informed participated but 18.18% of uninformed did | Investigate barriers lowering participation - High uninformed consideration but lower participation | Address external barriers to participation - High mixed consideration but lower participation | Bridge the gap between consideration and participation - Gaps between consideration and participation across groups | Efforts to build trust with participants - Gaps between consideration and participation across groups | Refine enrollment process based on drop-offs - Gaps between consideration and participation across groups |
| III.B. Determinants of Early Introduction | Proactively introduce trials early on - 44% of informed had early introduction | Campaigns/guidelines on early introduction - Only 11% of mixed had early introduction | Advocate for early education - Only 13.64% of uninformed had early introduction | Early introduction campaigns - Only 11% of mixed had early introduction | Collaborate for early trial exposure - Only 13.64% of uninformed had early introduction | Consider direct patient outreach - Only 11% of mixed had early introduction |
| IV.A. Gender-Based Perspectives | Address gender-specific misconceptions | Assess presentation of information | Advocate for clear, direct communication | Evaluate and refine outreach methods | Dispel gender-based misconceptions | Research root causes of misconceptions |
| IV.B. Age-Driven Knowledge | Offer age-focused training - 35-44 age group frequent across categories | Investigate low participation from other age groups | Organize community outreach - 35-44 age group frequent across categories | Age-tailored campaigns and initiatives - 35-44 age group frequent across categories | Provide age-specific informational materials - 35-44 age group frequent across categories | Recruit diverse age groups for studies - 18-24 overrepresented among informed |
| IV.C. Regional Differences | Analyze successful/unsuccessful policies - Yukon stood out with highest uninformed rate and BC stood out with highest informed rate | Design a target study to see what BC and Yukon racialized and marginalized communities perspectives are | Analyze successful/unsuccessful policies - Yukon stood out with highest uninformed rate and BC stood out with highest informed rate | Analyze successful/unsuccessful policies - Yukon stood out with highest uninformed rate and BC stood out with highest informed rate | ||
| IV.D. Racial & Ethnic Disparities | Assess communication strategies, provide a study solely for the Latin American group as they stood out with highest uninformed rate | Design a target study to see what Latin American perspectives are | Assess communication strategies, provide a study solely for the Latin American group as they stood out with highest uninformed rate | Assess communication strategies, provide a study solely for the Latin American group as they stood out with highest uninformed rate | ||
| IV.E. Cultural & Religious Influences | Awareness that religion does play an important role in individual's health decisions | Awareness that religion does play an important role in individual's health decisions - 'Extremely important' was 33.33% for informed group | Emphasize importance of beliefs in outreach - 'Very important' more prominent among uninformed | Campaigns incorporating cultural and religious beliefs - 'Very important' more prominent among uninformed | Design trials accommodating beliefs - 'Extremely important' was 33.33% for informed group | Research relationship between beliefs and awareness - 'Extremely important' was 33.33% for informed group |
| Report Categories & Subcategories | Nonprofit (health-centered focus) |
|---|---|
| I.A. Clinical Knowledge Reconciliation | Refine educational programs based on familiarity levels - 18.18% of uninformed were very familiar |
| I.B. Background and History | Early introduction campaigns, even before diagnoses - 46.67% of informed did not have prior knowledge of clinical trials before an actual experience of cancer either personally, as survivor or caregiver |
| I.C. First Contact Origins | Strengthen collaborations with medical professionals - 34.38% of informed first heard from doctors |
| II.A. Trustworthy Information Channels | Use community collaborations to disseminate information - Doctors had lower trust rankings |
| II.B. Considerations for Participation | Educate public and address trial concerns - "Time commitment" was top concern across groups |
| II.C. Facilitators for Participation | Highlight societal benefits of trial participation - Informed group valued autonomy and support |
| II.D. Barriers to Participation | Address reservations through accessible educational campaigns - Medical jargon was a common barrier |
| III.A. Clinical Trial Outcomes | Bridge gaps between consideration and participation - Gaps between consideration and participation across groups |
| III.B. Determinants of Early Introduction | Promote early introduction of clinical trials - Only 11% of mixed had early introduction |
| IV.A. Gender-Based Perspectives | Evaluate and refine outreach methods by gender |
| IV.B. Age-Driven Knowledge | Age-tailored campaigns and outreach initiatives - 35-44 age group frequent across categories |
| IV.C. Regional Differences | Design a target study to see what BC and Yukon racialized and marginalized communities perspectives are |
| IV.D. Racial & Ethnic Disparities | Design a target study to see what Latin American perspectives are |
| IV.E. Cultural & Religious Influences | Campaigns incorporating cultural and religious beliefs - 'Very important' more prominent among uninformed |
First and foremost, I wish to express my profound gratitude to the University of Saskatchewan for offering me the unparalleled opportunity to undertake my Master's practicum, a pivotal phase in my academic journey.
I extend my heartfelt thanks to Colorectal Cancer Canada, the esteemed agency where I had the privilege of conducting my practicum. Your unwavering commitment to furthering the understanding of colorectal cancer, coupled with your impactful community initiatives, has been a source of inspiration throughout my tenure.
To Ms. Iris Karry, Manager of Patient Education & Research, your guidance and invaluable insights have been instrumental in shaping my research perspective. Your dedication to patient well-being and rigorous academic inquiry has left an indelible mark on my academic trajectory.
I am equally grateful to Ms. Natasha Bassett-Saltarelli, Manager of Community Outreach, for her continuous support and mentorship. Your expertise in community engagement and outreach illuminated the practical aspects of our field and enriched my practicum experience immeasurably.
A special mention must be made of Ms. Claudia Madampage, MPH Practicum Coordinator at the University of Saskatchewan. Your consistent encouragement, meticulous oversight, and unwavering belief in my potential have been the pillars supporting my academic endeavors.
Lastly, to all the peers, faculty, and staff I had the pleasure of interacting with during this journey, your collective wisdom and camaraderie have greatly enhanced my learning experience.
In conclusion, this practicum has not only been an academic undertaking but also a journey of personal and professional growth. The knowledge, skills, and relationships fostered during this period will be treasured and carried forward into my future endeavors.
The Belmont Report, crafted in 1978, outlines the ethical principles for human research: respect for persons, beneficence, and justice. Health Canada has adopted these principles. Some of the provided statements align with the Belmont Report, while others do not. For instance, statements emphasizing safety and autonomy in clinical trials align with the Belmont principles, while those with factual inaccuracies or potential misconceptions do not.
Participants' responses can categorize them into three groups:
Grouping participants by understanding helps pinpoint knowledge gaps and tailor communication for better representation in trials. This approach aligns with the survey's objectives, focusing on diversity, knowledge, and ethical considerations, ultimately supporting the broader goals of the study.
| Understanding Level | Belief on Trials Determining Safety & Effectiveness | Understanding of Review Process to Prevent Harm | Awareness About Ability to Leave Trial | Description |
|---|---|---|---|---|
| Informed Group | True | True | True | Aligns with Belmont Report's principles, displaying clear grasp of trials' purpose, safety, and autonomy. |
| Uninformed Group | False/Unsure | False/Unsure | False/Unsure | Lacks essential knowledge or holds misconceptions, indicating a need for education. |
| Mixed Understanding Group | Varies (Neither exclusively True nor False/Unsure) | Varies (Neither exclusively True nor False/Unsure) | Varies (Neither exclusively True nor False/Unsure) | Partial understanding possibly combined with misconceptions or uncertainties. |
Types of Questions: The survey uses a mix of closed-ended question types including multiple choice, checkboxes, rating scales, and true/false. This allows for quantitative analysis of the results. There are also a few open-ended questions to gather more qualitative insights.
What the Questions Convey: The questions aim to gauge knowledge, attitudes, and experiences related to clinical trials. Initial questions about demographics, cultural factors, and cancer experiences establish contextual baseline data. Subsequent sections assess clinical trial familiarity, knowledge, motivations, concerns, information sources, and participation rates.
Information Obtained: The survey is designed to uncover:
This provides a robust data profile of perceptions, readiness, and needs related to clinical trial participation across diverse groups.
Complexity Level: Most questions use simple, direct language that is easy to comprehend. No specialized medical knowledge is required. The reading level should be accessible to secondary school level and above.
Accomplishing Goals: The survey questions align well with the stated goals of understanding knowledge, attitudes, and participation rates related to clinical trials among diverse underrepresented populations. The data collected should enable quantitative analysis of these aspects by demographic.
Overall, the survey uses a sensible mix of question types and clear language to gather useful insights to identify gaps and guide strategies to improve clinical trial diversity and inclusion.
Introduction
To make sure that the treatments tested in clinical trials are safe and effective for all, it is important that they involve participants from diverse populations. Diverse representation in trials is important because the effectiveness and safety of a drug or therapy in one population does not necessarily mean that it will be the same in other populations.
There is a lack of Canadian health data on the participation rates of diverse populations in cancer clinical trials. From American and other international data, however, racialized and marginalized populations are not adequately represented in cancer clinical trials.
The purpose of this survey is to understand the level of knowledge and experiences of individuals from diverse populations that are typically underrepresented in cancer clinical trials.
The survey should take approximately 15 minutes to complete.
Consent: By clicking NEXT below, I affirm that I am 18+ years old and voluntarily consent to participate in this survey.
| Statement | True | False | Unsure |
|---|---|---|---|
| Clinical trials help determine the safety and effectiveness of a new therapy/treatment, drug etc. | |||
| Clinical trials are carefully reviewed to make sure people who participate are not harmed. | |||
| I won't be able to join a trial if my doctor does not tell me about it. | |||
| I am allowed to stop participating in a clinical trial at any point. | |||
| In order to participate in a clinical trial, I need to live near a major hospital. | |||
| In order to participate in a clinical trial, I need to live in the city where the clinical trial is taking place. | |||
| All clinical trials involve testing new drugs. |
| Source | 0 | 1 | 2 | 3 | 4 | 5 |
|---|---|---|---|---|---|---|
| Doctor/Healthcare team | ||||||
| Other patients/survivors | ||||||
| Advocacy/non-profit organizations | ||||||
| Social media | ||||||
| Family/friends | ||||||
| Other (please specify): |
| Factor | Not at all important | Slightly important | Moderately important | Very important | Extremely important |
|---|---|---|---|---|---|
| Clear information about the trial | |||||
| Support from family/friends | |||||
| Trust in the medical team | |||||
| Convenience of location | |||||
| Other (please specify): |
Prior to detailing the survey population and participant filtering, it's crucial to understand the survey's dissemination process. Emails were dispatched to various organizations serving racialized and marginalized communities. Organizations that did not respond to the email were followed up with via phone. The survey was available from June 30th to July 26th.
Canadian Arab Institute, Canadian Arab Federation, Arab Community Centre Of Toronto, Iranian Canadian Congress, National Council On Canada-Arab Relations, Canadian Druze Society, National Council Of Canadian Muslims (NCCM), Muslim Association Of Canada, Muslim Neighbour Nexus, Muslim Food Bank Community Services Society, Immigration, Refugees And Citizenship Canada (IRCC), Canadian Council For Refugees, Immigrant Services Society Of BC, Calgary Immigrant Women's Association, Newcomer Centre Of Peel, Immigrant And Refugee Community Organization Of Manitoba, Multicultural Association Of The Greater Moncton Area, Black Lives Matter, Federation Of Black Canadians, Black Health Alliance, Hogan's Alley Society, Black Business Initiative, CEE Centre For Young Black Professionals, Black Legal Action Centre, Chinese Canadian National Council, Alliance Of South Asian AIDS Prevention, South Asian Women's Centre, Asian Heritage Society, Centre For Immigrant And Community Services, Multicultural Helping House Society, Afrolatino Dance Company, Black Lives Matter Global Network, and many more (full list available upon request).
The initial survey population comprised 200 participants. To tailor the analysis to minority groups, respondents identifying exclusively as White were excluded (n=23). Furthermore, respondents indicating multiple races were grouped under a single 'mixed race' category.
To whom this may concern,
I hope this message finds you well. My name is Mordecai Machazire, and I am a graduate student in the Master of Public Health program at the University of Saskatchewan. I am currently doing my practicum with Colorectal Cancer Canada (CCC), a non-profit organization committed to improving the lives of those affected by colorectal cancer.
We are currently working on an initiative that aims to raise awareness of cancer clinical trials within racialized and marginalized communities and involves the dissemination of an online survey to better understand the barriers and facilitators these communities face in accessing and participating in clinical trials. Given the connection your organization has with the Muslim community, we would like to explore the possibility of collaborating on our health equity initiative entitled "Increasing Awareness and Participation in Clinical Trials among Marginalized and Racialized Communities."
Should you consider collaborating with us, there are a few ways to do so:
Please note: The survey links below are no longer valid. Attempting to access them will display "This survey is currently closed. Please contact the author of this survey for further assistance." You will be redirected to https://projecthamburg.github.io/maplescholar/ for more information.
Should you have any further questions, please reach out to Iris Karry at the coordinates below.
Best regards,
Here are some potential study limitations based on the clinical trials survey analysis report:
In summary, limitations exist around sample representativeness, bias in self-reported data, participation restrictions, narrow focus, and recommendation feasibility. However, the study makes a meaningful contribution to understanding clinical trial perceptions among racialized and marginalized communities. Further research can build on these findings using broader samples and methodologies.