Table 2. . Items rated of highest importance in patient engagement by Black, Indigenous and People of Color adolescent and young adult cancer patient experts.
| Item | Mean (Times ranked top three priority)† |
|---|---|
| Question 1: Characteristics of cancer research or advocacy that successfully includes perspectives of racially minoritized teen or young adult patients | |
| 1. Build relationships with communities and listen to patients who are not usually heard | 6.76 (23) |
| 2. Ensure that BIPOC individuals are not taken advantage of or tokenized | 6.76 (10) |
| 3. Recruit a diverse range of BIPOC patients and let them give actual input into the study | 6.69 (20) |
| 4. Utilize a diversity of participants in all sociodemographic aspects, not just race (e.g., education, class, age at diagnosis) | 6.59 (18) |
| 5. Address practical barriers to participation, such as hiring interpreters for non-English-speaking patients | 6.48 (8) |
| 6. Employ trustworthy BIPOC leaders to head research projects | 6.45 (17) |
| Question 2: Topic selection and research prioritization | |
| 1. Increase diversity among those patients who also serve as advocates | 6.55 (15) |
| 2. Identify racial/ethnic inequities in the research topic of interest | 6.48 (19) |
| 3. Employ more BIPOC researchers conducting studies to make participants comfortable | 6.48 (16) |
| 4. Engage patients earlier in the process and at higher levels within institutions | 6.38 (19) |
| 5. Include more intersectional populations, such as BIPOC patients who identify as LGBTQ+ | 6.34 (12) |
| 6. When explaining the purpose of the study/project, also communicate the impact the issue can have on BIPOC patients in particular | 6.24 (15) |
| Question 3: Proposal review: design and conduct of research | |
| 1. Provide education and be honest about what participating in cancer research and advocacy really entails | 6.72 (12) |
| 2. Promote the significance of participating in cancer research and acknowledge how AYA patient advocates are important and really matter in research projects | 6.69 (13) |
| 3. Be honest and authentic and break things down for patients into explanations they can easily understand | 6.66 (14) |
| 4. Utilize more BIPOC researchers actually doing the research to organically make people feel engaged. Diversity cannot be forced | 6.62 (17) |
| 5. Give BIPOC AYA patients information and access to participation in research studies regardless of their financial situation, social standing, etc. | 6.59 (17) |
| 6. Identify barriers to recruitment and participation among BIPOC AYA patients and reduce these barriers (e.g., by improving outreach, increasing methods of interaction/communication and/or helping participants feel safer and more secure in the research setting/process) | 6.45 (23) |
| Question 4: Dissemination and implementation of results | |
| 1. Use community peers and peer-based language and methods to present results from credible sources instead of incomprehensible jargon that may potentially discourage patients | 6.66 (11) |
| 2. Invest in outreach to BIPOC AYA cancer patients who are commonly overlooked or ignored and who do not have easy access to opportunities to participate (e.g., patients in rural settings) | 6.62 (14) |
| 3. Provide results for different levels of comprehension to reduce barriers to access so patients who have a higher level of understanding can access more complicated information without compromising the accessibility of patients who may be younger or otherwise need more simplified explanations | 6.55 (23) |
| 4. Get research results out to the groups/communities that can really use them, not just other researchers | 6.52 (15) |
| 5. Keep it brief and creative and use social media and technology to disseminate results in a way that is easy for patients to understand and use | 6.41 (17) |
| 6. Invite a diversity of new BIPOC AYA patient advocates to participate in research and stop using the same patient advocates repeatedly | 6.10 (16) |
| Question 5: Evaluation of dissemination and implementation strategies | |
| 1. Provide virtual access to conferences, committee meetings, etc., so participation is easier for AYAs | 6.66 (13) |
| 2. Allow patient advocates to provide truly anonymous feedback so they can be completely honest without concern of repercussions like not being invited to participate again | 6.55 (21) |
| 3. Promote and improve virtual access to conferences and meetings to reduce barriers to attendance | 6.48 (14) |
| 4. Compensate BIPOC AYA patients for their time, energy and expertise | 6.48 (18) |
| 5. Be flexible with scheduling patients' participation whenever possible | 6.48 (10) |
| 6. Enable BIPOC AYA patients to actually participate in the conference or meeting and understand and address what they need to get there; otherwise, these events are useless | 6.38 (20) |
| Question 6: Transparency–honesty–trust | |
| 1. Transparency, honesty and trust are the foundation of everything, and researchers cannot do anything without them | 6.72 (19) |
| 2. Implementing open and honest communication will lead to more trust | 6.59 (12) |
| 3. It is important to build trust from the beginning and be transparent in order to avoid doing harm and to ensure that participants feel safe | 6.59 (21) |
| 4. Trustworthy relationships are especially important for AYAs, who are just coming into their own and need to feel like there is trust between them and those they interact with | 6.55 (19) |
| 5. If there is trust, BIPOC patients will be more likely to share information that is going to be useful without holding anything back | 6.52 (15) |
| 6. BIPOC patients already have mistrust of the medical community because of lived experiences of being taken advantage of | 5.52 (10) |
| Question 7: Most important reason(s) why BIPOC AYAs participate in cancer research or advocacy projects | |
| 1. ”I hope that sharing my story and being an advocate can dispel myths and change a racial minority patient's life; so they won't have to lose parts of themselves or die because they didn't know they had other choices“ | 6.24 (17) |
| 2. ”I do it to make healthcare better for the patients who come behind me“ | 6.03 (20) |
| 3. ”Participating in cancer research or advocacy projects is meaningful and helpful to myself“ | 5.93 (11) |
| 4. ”It makes me happy to feel needed and that my research efforts contribute to society“ | 5.90 (6) |
| 5. ”I want to promote further research for BIPOC teen and young adult cancer patients“ | 5.83 (18) |
| 6. ”Representation matters. I found that I wasn't represented, so I took it upon myself to participate“ | 5.52 (24) |
| Question 8: Most important reason(s) for not participating in cancer research or advocacy projects | |
| 1. ”When the patient has a rare cancer or condition, there are not that many studies targeted at them“ | 4.79 (16) |
| 2. ”I am choosy because I really value my time. And I really value my community's time and racialized people's time“ | 4.72 (21) |
| 3. ”I just haven't come across any cancer research studies for me to participate in, so I jumped on this one when I saw it“ | 4.52 (20) |
| 4. ”It is hard to feel valued without compensation“ | 4.38 (22) |
| 5. ”Participation required the patient advocates to incur financial costs“ | 4.24 (9) |
| 6. ”I do not trust researchers and feel they lack integrity“ | 4.21 (8) |
BIPOC AYA patient experts rated the importance of response options derived from the Round One survey on a Likert scale, ranging from 1, ‘not at all important’, to 7, ‘extremely important’. They also ranked their top three priority responses for each question.
†
Number of times ranked in top three priorities.
AYA: Adolescent and young adult; BIPOC: Black, Indigenous and People of Color; LGBTQ+: Lesbian, gay, bisexual, transgender, queer or questioning.