Community Engagement Challenges and Opportunities
• BEGIN in this space, VALUE diverse populations and put them at the center of your efforts
o remember racial/ethnic cultural diversity is not always present in biobanks
• This takes real TIME, needs to be a concerted and consistent effort in relationship building, trust-building.
• Will need to build TRUST- this may include community leaders such as local church/faith groups, midwives, doulas, WIC team, local and national advocacy groups
o Sensitive to culture, beliefs, family structure
o Be willing to go to where the communities are you hope to recruit from and consider use of resources such as mobile translators if needed
o Accept there may be institutional distrust of hospitals, universities
o Follow-up is critical - what did you learn from this study and what does it mean to this community. How is this helping them?
• TRAIN community outreach staff to build trust
o Concordant race, concordant cultural understandings
o Configure these staff recruitment and trainings in budgets, invest in community
Resource Availability and Allocation – Challenges and Opportunities
• Stay mindful and focused that there are TWO PATIENTS in a pregnancy- mother and fetus. When there are complications, there is often insufficient appreciation that care be delivered with priority to both fetus AND mother Mom's health needs/risks can be missed. Mom's voice needs to be heard.
• Recruitment staffing will be the face of the research investigation – seek concordant race and cultural background (?disability) to create atmosphere of comfort and trust.
o Engaging trusted community health care providers, faith community in conversation to promote trust
o Engage family members
• Do not assume access to technology- broadband for example, cost of minutes. So new technology can create greater disparity unless the focus is on bridging the access divide and can impair recruitment efforts. Consider use of digital navigators.
• For study participation think holistically about all the potential needs of the patient – food insecurity, travel, time off from work, child care, disability access – everything.
o Should compensate the patient and the community including outreach peer workers for their participation- sends a message "I value your time and input"
o Be mindful of balance of insufficient vs. too much information while trying to respect IRB protocols
• Women of color don't get the same resources or access to resources as white women – needs to be a focus on conscious and unconscious bias. This also happens with physicial disabilities
o In some cases, private vs public care creates disparities in care offered.
o Acknowledgement of institutional distrust
o Education and training for everyone at every level that the patient will interact with so there are no disparities in treatment among the patient population. This will help to combat the distrust of institutions
• In the disability space, often groups are inappropriately lumped together not unlike race – for example spina bifida with spinal cord injury.
o As with skin color, disability can color perceptions about the patient (e.g., they don't have sex, don't have babies) and lead to less quality of care.
• A major gap is knowing where to go for information. Web searches bring up too many hits to be of much value, and this is further exacerbated if the person is looking for information specific for their race/ethnicity/cultural background or with specific disabilities.
o A huge opportunity to generate a portal with vetted information. To be maximally useful it needs to be able to speak to very diverse populations.
o CDC has information but it is too broad and not that easy to navigate
o The UK has developed resources (TOMMY's https://www.tommys.org/about-us )
o In the disability space in Toronto there has been success with personal outreach so people can interact and feel a personal touch
Addressing Diversity – Challenges and Opportunities
• Race is not easily stratified – cannot lump all people together based on skin color or ethnic background. Same true for disabilities.
• Socioeconomic status does not drive racial differences in outcome, it is a social construct and health outcomes are driven by environment
o ignores the impact of microaggressions
• Must recognize that within a "community" there can be a broad array of subpopulations with different stories and influences. You don't know what happened before they showed up there and you should not make assumptions based on how they look on the surface.
• We all need to improve our conversations in this space- we will all need to be brave and not be afraid to be mistakes.
• Make sure Paternal race is part of data
Policy and Funding Challenges and Opportunities
• Address challenges to justify funding for developing community partnerships, more nuanced recruiting for staff, more robust patient supports and incentives for participation- funding opportunity announcement could build this into the budget
• Require patient diversity and promote leveraging multisite involvement including private and public institutions
• Create conversations on successful tactics as we have discussed. Amplify best practices.
• Increasing diversity in all conversations isn't just the right thing to do, it is essential to makes the science better.
• Educate NIH peer reviewers - make diversity a priority of studies and of investigators, train and discuss implicit bias. Historical example includes gender inclusion.
• Consider reviewer input from experts in anthropology and/or diversity equity and inclusion and/or write into proposals.
• Let our DATA drive our knowledge about race and disability.