Table 2 Twelve recommendations to include everyone in cancer ED research and build trust between researchers and minoritized communities.

#1

Establish long-term connections and trusting relationships with minoritized groups (not bound by specific research projects and funding).

a. Funders allocate multi-year budgets to institutions to establish long-term programmes between researchers and members of minoritized groups/community organisations.

b. Institutions allocate budget and resources to long-term permanent programmes between researchers, community engagement practitioners and members of minoritized groups/community organisations.

c. Research teams work collaboratively with both community and engagement practitioners to establish trusting, long-term relationships with members of minoritized groups and local community organisations through open-minded conversations.

Advice for Good Practice:

• Enable ‘community sensitisation’, the mutual exchange of information about research and community characteristics before any research-related activities happen^a.

• Work with community engagement practitioners and community liaisons to help shift the institutional power dynamics [118]^a.

• Include people from minoritized groups in research protocol design and grant review panels at institutions [119].

• Work with local community organisations to understand groups’ priorities and concerns beyond the concrete research topic (e.g. through town halls, discussion groups, informal discussions, online communications)^a.

• Share available resources in the institution with groups (see recommendation #2).

• Train members of minoritized communities to become peer educators (see recommendation #4).

• Representatives from research teams/ institutions attend community-led events (e.g. local/cultural celebration, health fair, rally, or religious celebration, when appropriate and invited)^a,b.

#2

Establish systems and processes to share resources and expertise with minoritized groups to help address some of their needs and priorities.

a. Funders create/allocate funds to community-led research grants to be administered in partnership with existing research institutions.

b. Institutions create ‘community-led research programmes where minoritized groups/community organisations can apply for funding to address their own research priorities by collaborating with researchers and accessing the institution’s resources (See: [120, 121]). As well as community engagement posts to signpost resources and support research teams in liaising with communities.

c. Engagement practitioners collaborating with research institutions map resources and expertise already available in the institution, and share opportunities with minoritized groups.

Advice for Good Practice:

• Organising educational or Q&A sessions about topics chosen by the community [122].

• Sharing useful medical knowledge in dedicated sessions^a.

• Helping with university applications or securing internships in related fields for members of minoritized communities as part of outreach efforts.

• Lending support in grant applications, project design, or legal proceedings [123].

#3

Ensure all study materials are culturally sensitive, translated into appropriate languages, and accessible in their format, language and dissemination.

a. Funders allocate sufficient budget and time for research teams to prioritise culturally sensitive and accessible design, translation and dissemination of all study materials.

b. Institutions make services such as interpretation, translation and graphic design available to research teams.

c. Research teams work with representatives from minoritized backgrounds/engagement practitioners to develop culturally sensitive and accessible design and dissemination of all study materials.

Advice for Good Practice:

• Prioritise face-to-face interaction about the research with members of minoritized groups where possible to foster and maintain trust [6, 37, 119, 124,125,126].

• Disseminate study materials in multiple and accessible formats (e.g. video, email, text, phone, in person, social media), languages (incl. low literacy English) and occasions (before, after and during the study) [37, 127]^a.

• Use simple and clear language (plain English/lay language), avoid the use of scientific jargon and complex terminology, provide relevant information in the right order, and ensure the design is legible (font size, formatting, colours) [127].

• Ensure that translation and interpretation services maintain the tone, level and relevance of the original text [100, 127].

• Work collaboratively with engagement practitioners, multicultural agencies and community organisations to create messaging and patient information sheets that are inclusive and accessible in tone and content^a.

• Display cultural sensitivity, respect, and awareness of potential cultural, generational and linguistic barriers that minoritized groups may face in communication design and dissemination [128].

• Ensure the transparency, consistency, use of credible sources/data and display official logos of institutions in research-related communications to avoid suspicion and distrust [129]^a.

#4

Train and recruit community champions to become peer educators on cancer ED and help promote study participation.

a. Funders allocate budgets for peer educator recruitment and training.

b. Institutions lead peer educator programmes by creating and updating databases of peer educators and providing (guidance on) training.

c. Research teams or the institutions’ engagement practitioners recruit peer educators, provide training for particular research project needs and foster mutually beneficial relationships with them.

Advice for Good Practice:

Transferable skills and access to opportunities that can be included in peer educator training:

- Knowledge of cancer, cancer early detection, and cancer research

- Leadership and public speaking skills

- Best practices in teaching

- Best practices in research recruitment

- Research ethics including the risks and benefits of participating in clinical research

- Communication, messaging and social media skills

- Experience organising (community) events

- Access to career, apprenticeship and internship opportunities in cancer ED networks

- Providing mentors in the field of cancer ED

#5

Transparently and accessibly communicate the benefits, risks and expectations of participating in cancer ED studies to potential participants, including the possibility of overdiagnosis and overtreatment.

a. Funders ensure research proposals minimise risks for participants, and require research teams to make detailed arrangements for follow-up care.

b. Research teams make a plan (with input from participants) on how and when to communicate risks and benefits to participants in an accessible and timely manner.

Advice for Good Practice

• Ensure patients can ask questions and express concern in an accessible way (see recommendation #3) [44].

• Consider the setting in which these conversations take place; a hospital/clinical setting may arouse negative associations and mistrust^a.

• Be transparent from the outset of the study (enrolment stage) that there is a likelihood that participants’ results may be uninformative or uncertain from a diagnostic perspective [46].

• Ask for guidance from community organisations to ensure that communications, including informed consent processes, and spaces in which they occur are accessible and trustworthy for the groups you are trying to reach^a.

#6

Grant minoritized groups appropriate compensation and support for participating in cancer ED research.

a. Funders allocate a budget for appropriate compensation and incentives.

b. Institutions develop clear and accessible processes that allow for flexible and diverse methods of compensation for participation.

c. Research teams determine, in collaboration with representatives from minoritized groups, which compensation and incentives would be useful/appropriate and deliver them.

Advice for Good Practice:

• Co-develop a clear policy on payment and compensation for participation with contributors from minoritized groups/community organisations to ensure no important barriers are missed, and that payment methods are appropriate and communicate it to participants before enrolment.

• When deciding on compensation for research participation, look into additional costs for participants: missed work, childcare and family duties, transportation, and the cost of a carer/translator/companion all add to the opportunity cost of participation.

• Provide additional support in cases of research that is conducted online/via phone such as paying for data, WIFI, or minutes and/or securing a private, quiet space.

• Investigate how recipients of benefits or other state financial support are affected by the proposed compensation [130].

• Communicate clearly what compensation covers (e.g., participation in clearly outlined research activities) and what it does not (e.g., health insurance, treatment) so participants can make an informed choice.

#7

Use representative samples in cancer ED trials and document implemented and evaluated engagement/recruitment approaches. If a study does not use a representative sample, it must explain/justify why this is the case.

a. Funders make representative and inclusive sampling a primary consideration when reviewing grant applications, requiring researchers not using representative samples to justify why this is the case. Additionally, funders should mandate in grant applications that researchers document attempted engagement and recruitment approaches.

b. Institutions make engagement and recruitment approaches used in research publicly available.

c. Research teams use the four Trial Forge questions to ensure their samples are representative [21]. Document implemented and evaluated engagement and recruitment approaches and share this information with the institutions, funders and/or in published articles.

d. Academic journals and publishing outlets encourage authors to publish recruitment and engagement approaches as part of the methodology when submitting manuscripts.

Advice for Good Practice:

• Use Trial Forge questions at the outset of the research design [21].

Documentation of recruitment and engagement approaches should include:

- Diversity within the research team and people tasked with recruitment/engagement.

- Locations of recruitment/engagement.

- Duration of recruitment/engagement.

- Methods of recruitment and engagement (e.g. partnership with community organisations, health fairs, social media posts) perceived benefits and limitations of these methods, and inclusivity considerations.

- Methods for retention of participants (including retention rates).

- Incentives, compensation and resources offered to participants (e.g., transportation, interpreting, payment).

• Use Trial Forge questions at the outset of the research design [21].

#8

Collect, analyse and share data on participant demographics in cancer ED studies.

a. Funders incentivize the collection of aggregate data on research participants’ characteristics in grant applications.

b. Institutions train researchers to responsibly collect, store and share aggregate data on relevant participant characteristics.

c. Research teams collect and share data on the characteristics of study participants, in accordance with data protection laws.

d. Academic journals and publishing outlets require researchers to include data on relevant characteristics of research participants when submitting manuscripts.

Advice for Good Practice

• Transparently explain to participants why these data are collected and how they will be handled under safeguards and data protection regulations (aggregation, anonymization, restricted access to data storage).

• Give participants the option to answer in a multiple-choice format, where possible, so that they feel less exposed.

• Participants should always have and be made aware of the option not to answer questions.

Recording the following characteristics when conducting a study has already been suggested as standard practice [119]:

- The disease, problem, or condition under investigation

- Special considerations related to sex and gender, age, ethnic group, and geography.

- The overall representativeness of the trial, including how well the study population aligns with the target population in which the results are intended to generalise.

Workshop participants suggested also adding:

- Sexual orientation

- Gender identity [90]

- Disabilities

- Religious affiliation

- Collecting data on postcodes rather than broader ‘geography’, when relevant.

#9

Create an appropriate communication and support plan for participants for whom the cancer ED study detects increased risk of cancer or lesions.

a. Funders request that a detailed plan for such a scenario is outlined in grant applications and ensure that proposed follow-up care is covered by appropriate institutions.

b. Institutions support research teams by signposting resources, services, and best practices.

c. Research teams co-produce a detailed plan of whether/how/when to communicate findings to affected participants, and how further testing, referrals and counselling will be arranged.

Advice for Good Practice

• Co-produce a follow-up plan with input from relevant public contributors.

• Employ a non-clinical participant navigator on the research team to support individuals with needs relating to a positive result.

• Budget for community specific, accessible dissemination including but not limited to translations and interpretation for live events.

• Provide ways for participants to reach out throughout the research cycle.

#10

Disseminate study updates and results in an accessible and timely manner, expressing gratitude to participants for their contribution.

a. Funders allocate a budget for research teams to share updates and results with participants, considering that the deadline to use this budget could extend beyond the end of the grant.

b. Research teams plan and budget to give participants regular updates on the research in appropriate formats and languages.

Advice for Good Practice:

• Clearly and accessibly communicate to participants exactly when and how results will be shared with them from the outset of the study (For example see Healthy Oregon Project [131]).

• Disseminate results via multiple formats and channels [132].

• Consider providing the following content: factual information, health implications and general research information [83].

• Relay results to participants as soon as possible (fieldwork participants expressed their desire for results in 6–10 weeks). In cases when results will take a long time, explain this to participants from the outset and offer sessions where they can ask questions and express concerns in the meantime^a.

• Express gratitude to participants and demonstrate that their time, efforts and contribution are valued [127, 133].

#11

Mandate training on inclusive community engagement approaches with minoritized groups.

a. Funders mandate training through grant applications, provide resources for high-quality training, and signpost available training to researchers whose institutions do not yet provide adequate training opportunities.

b. Institutions mandate and organise training from early stages in researchers’ careers, and signpost researchers to training if they do not provide this.

c. Research teams attend training, ideally before applying for funding and designing a study.

Advice for Good Practice

• Develop training sessions in collaboration with appropriate community organisations [21].

• Provide researchers with training early on in their careers (doctoral, post-doctoral, early-career).

Topics that could be covered in training include:

- Health disparities for minoritized groups

- Best practices in community engagement approaches

- Responding to (historical) experiences of marginalisation, trauma, ableism and racism in research

- Awareness of diversity, inclusion, and equity in research

- Developing cultural competence and cultural humility

#12

Create inclusive employment opportunities and progression pathways in Cancer ED research for members of minoritized groups.

a. Funders collect equity and inclusion data beyond lead applicants and incorporate the diversity of research teams into scoring criteria when reviewing grant applications.

b. Institutions offer inclusive recruitment, employment and progression opportunities in Cancer ED research, incentivise diversity of research teams and ensure an inclusive working culture.

c. Research teams create inclusive hiring criteria and role descriptions and remove barriers unfairly impacting minoritized groups from the recruitment process.

Advice for Good Practice

• Create apprenticeships and internships on ED cancer research teams for members of minoritized groups (see Cancer Research UK, 2021 [97]).

• Identify and remove barriers that minoritized researchers in cancer research face; e.g. create flexible employment policies, equitable access to financial resources and progression opportunities [97].

• Actively attempt to increase grant, research and job applications from minoritized applicants (e.g. create grants for early career researchers as opposed to senior researchers, advertise job opportunities using inclusive communication methods, reward diverse research teams, and provide pre-application guidance and support).

• Devise actionable Equality Diversity and Inclusion employment plans which include proposed actions, intended outcomes, timelines and metrics (See: Wellcome [134] Cancer Research UK, 2021 [97]), and conduct external/internal evaluations to monitor progress (See: The Social Investment Consultancy and The Better Org, 2022 [135]).

• Create inclusive, transparent and equitable hiring criteria and remove requirements that disproportionately rule out applications from members of minoritized groups

• Adopt anti-racist principles, toolkits and training, with a zero-tolerance policy for racism, discrimination and bullying [135].