Genomics is a powerful tool for improving health outcomes in both individuals and the population as a whole. Population-level genomic studies are essential to lay the groundwork for effective genomic screening of individuals, but genomic data from many underserved communities is lacking. Developing effective outreach to these communities can be difficult as standard approaches for public outreach can inadvertently exclude communities that suffer the most from health inequity.
A panel of experts in healthcare diversity, equity, and inclusion: Tomi Ogundimu, Ann-Gel Palermo DrPh, MPH and Tshaka Cunningham, PhD met with Helix’s Emily Richmond, MPH, MBA to discuss how to improve health equity, including the opportunity to expand education and community engagement through large-scale population genomics programs.
While current population genomic studies are working to overcome these limitations, there is still more that can be done to recruit communities with the greatest health inequities. For example, right now, only 2 percent of genomic data comes from individuals of African descent, despite making up more than 12 percent of the US population. Structural and systemic racism in science and medicine present a barrier to health equity for many groups. The first step in addressing this inequity is acknowledging its existence and recognizing how maintaining the status quo will not bring about change. Disruption is key; the status quo is not working, so new approaches are needed to engage and educate underserved communities.
Outreach lies at the heart of any strategy to improve health outcomes in specific communities. Communities may be defined by race, ethnicity, nationality, language, or socioeconomic status. Health communication strategies to reach specific communities must be tailored for the desired audience and consider that group’s specific needs, as well as barriers to care and communication. Practical recommendations from panel members include:
To truly address demographic inequity, start by looking at your institution. Before reaching out to others, take a coordinated approach toward achieving diversity and inclusion in your organization. Take a long hard look at how legacy business practices and policies affect diversity, equity, and inclusion in the workplace.
Community outreach involves physically going into communities and interacting with the population you aim to serve. “Boots on the ground” is a phrase repeated throughout the panel discussion; you must meet people where they are. Interacting with people face-to-face is the best way to lay a foundation for trust and effective communication, and by doing that, you can build essential relationships within your community. When developing an outreach strategy, planning and decision-making must include members of the community, empower the community by making them co-creators of your outreach plan.
No outreach campaign can be effective without trust, and that trust must be earned. While bringing your leaders to the community is one step towards building trust, it is also essential to leverage the influence of trusted messengers within the community. Local community leaders and religious leaders who have earned the trust of their communities are much-needed allies in the fight for community engagement as they can be utilized to help spread your message. Focusing on education, and not just collecting research samples, can showcase the personal benefit of participating in proactive genomic testing, as well as how population genomics programs can benefit the community as a whole.
Pay Close Attention to the Words Used
Patient education materials should be tailored to the specific audience you are trying to reach. Using community advisory boards or external consultants to audit and rewrite materials allows an organization to bring a fresh perspective to its outreach efforts. Health literacy and reading levels can vary greatly between communities, so messaging needs to be clear and simple. The panel also discussed the importance of considering the primary languages of an audience and offering outreach messaging and support accordingly.
Researchers sometimes tend to focus on gathering data for publications and grant proposals while neglecting the bigger picture—improving health outcomes. Improving health equity is a long-term challenge. Simply collecting genomic data is not enough; both individuals and the community as a whole must benefit from the data collected. You must maintain a consistent and authentic presence in the community and ensure that the community benefits from their participation in research. Engagement should be meaningful and sustainable.
Actively Seek Long-Term Resources
To provide sustainable community engagement, you need sustainable focus and resources. Dedicated personnel are needed to maintain community engagement. Institutions with philanthropic arms should actively seek long-term funding for outreach programs for targeted genomic testing that eventually integrate into the broader healthcare system’s standard of care. By doing so, health systems can focus on recruitment without worrying about where their next research grant or institutional funding will come from.
Be Flexible and Patient
An effective plan must be flexible and dynamic, allowing you to shift strategies while keeping your goal in focus. Choose metrics that reflect your goals and change course in response to those metrics. But at the same time, it’s important to be patient. Changing health outcomes does not happen overnight, it can take decades of work to see the improvements in health equity that are needed in underserved communities. You must work to build a framework for long-term systemic change, effectively changing the status quo.
Achieving health equity on a population level is a daunting task. It is also a goal that is within reach. Genomic screening has emerged as a cornerstone of individualized care, but to be effective it must be built upon data collected from a wide cross-section of the population. Communities that suffer from health inequities may see an immense benefit from genomic medicine, but this requires community-wide genomic testing. Engaging communities with health inequities in population genomics requires formulating a strategy built on the cornerstones of outreach and education. Being proactive, building trust, and maintaining meaningful, sustained community engagement is essential to achieve health equity.
Get in touch with our team to learn more about population genomics programs and how they can work in partnership with your health equity initiatives.