“Health equity cannot be achieved without actual lived experiences informing and advancing policies, regulations, laws, and initiatives that address disability rights, accessibility, and inclusion.”
– Dr. Richard Besser, Robert Wood Johnson Foundation
In today’s complex healthcare landscape, improving the quality of and access to care goes hand in hand with diversity, equity, and inclusion (DEI) initiatives. As members of the healthcare community, we must recognize that DEI is not simply another item on our collective list of things to do. DEI is actually an asset, rich with those “lived experiences” Dr. Besser mentions above, that when leveraged appropriately can improve research and health outcomes for everyone.
Better leveraging DEI starts from within—within company board rooms, offices, exam rooms—and then on to other patient care touchpoints. It requires the initiation and continuous fostering of openness to cultural and unique individual attributes that reside in our diverse population.
Organizations must first prioritize their own internal culture as one that values and promotes DEI for the betterment of the lives of both staff and patients. These efforts require strategies and best practices to ensure all workers are empowered to voice concerns about DEI at work. This culture of openness and sharing can then extend into patient interactions and research environments, creating an important feedback loop that improves the entire healthcare system. Ultimately DEI strategies that embrace those important seeds of open organizational cultures that spread into patient and health practitioner interactions and beyond can then open the door to therapies that serve larger populations, not just those who can afford world-class care or others who were lucky enough to be part of a group targeted by research trials.
At InformedDNA, we take pride in our DEI efforts, yet remain open to how we can improve them. Here are a few ways we encourage DEI in our clinical services delivery and clinical trials activities, and leverage this focus as an asset for our company and industry, along with some suggestions for how the healthcare industry as a whole might consider leveraging DEI.
Tackling DEI Challenges in Genomics-Based Healthcare
Just as every other healthcare sector faces DEI challenges, the genomics world is no different. We suffer from a lack of diversity in research populations that lead to the development of key tests, analyses, and risk scores needed in clinical practice such as GWAS (genome-wide association studies), polygenic risk scores, and gene expression classifiers. This lack compromises the validity of these offerings for large segments of the population.
These studies, tests, and scores are based on complex genomic analytics; more work is needed to better ensure they work effectively in all people. That starts by learning how the implications of the results apply not only in one general or dominant population but in diverse subsets of the population. This will require more inclusive research studies and clinical trials.
At InformedDNA, we work to develop more inclusive studies by encouraging partnership with patient advocacy groups (PAGs) to identify and engage a more diverse population in clinical trials and studies. Through our own research and discussions with biotech and pharmaceutical companies, we’ve learned that researchers who engage with PAGs are able to leverage the groups’ community awareness into patient-centric study design to the benefit of participants as well as trial sponsors. Through these partnerships, PAGs can also improve access to genetic counseling, genetic testing, and test interpretation for their patient communities.
Earning Trust with Patient Advocacy Groups
Gaining trust from a rare disease patient advocacy group requires a long-term relationship demonstrating a true commitment to the specific community. DEI initiatives at the organizational level are critical to enhancing dialogue and communication. We’ve found the following inclusivity measures have been helpful for nurturing advocacy group relationships and building out more diverse and inclusive studies:
- Wider eligibility criteria: Those with pre-existing conditions, for example, can still bring value to a trial; and genetic experts can target additional subgroups to add more value and expand participation
- Crossover trials: Re-enrolling participants who were on a placebo into later phase studies by operating extension trials
- Local and remote language translation: Having a roster of telephone-based medical interpreters for every language to help increase participation (something we have at InformedDNA)
- Engagement with community physicians: Engaging frontline health care providers to set up communication between patients and researchers
- Remote data collection: Helping patients avoid the burden of excessive travel to hospitals and reducing their costs to participate in a study
- Genetic testing interpretation and counseling: Pairing counselors with advocates to help ensure patients better understand data and research so they stay engaged in the study
Further, we now know that genetic experts and advocacy groups constitute a powerful partnership. Genetic counselors translate complex information into layman’s terms, and advocacy groups’ cultural knowledge is critically instructive for effective genetic counselor-patient communications.
What We’ve Learned
Our organization was founded on the promise of increasing access to genomics expertise to improve outcomes for patients. The end goal is not for every individual to undergo genetic testing, but to support each person and meet them where they are in their life, recognizing that there are many things that impact their situation. Those may include race, color, religion or creed, national origin or ancestry, sex, age, physical or mental disability, citizenship, veteran status, access to resources, and genetic information, among other personal and cultural factors.
Access to genetic counseling has historically been a significant problem for many populations. As the first company in the U.S. to offer a telehealth model for delivering genetic counseling—and, therefore access to genomics experts—InformedDNA eliminated barriers that were influenced by DEI factors. We promote equity through the distribution of and access to resources and we work to ensure access regardless of language or (dis)ability. We also assist patients who have limited resources for genetic testing—whether it’s high out-of-pocket costs and discussing alternative options for payment, finding testing that is much less expensive, or determining if an individual qualifies for payment assistance at testing labs.
We know the journey to better genomic-related testing and care involves better DEI practices. Again, those practices start internally, at the organizational and mission level, and for InformedDNA it’s embedded in how we hire and retain employees.
That’s why in our DEI statement, we share the belief that:
“The collective sum of the individual differences, life experiences, knowledge, inventiveness, innovation, self-expression, unique capabilities, and talent that our employees invest in their work represents a significant part of not only our culture but our reputation and company’s achievement as well.”
As an organization, we commit every day to learn how to leverage every one of our team’s and client’s “lived experiences” to help us “inform and advance” equitable genomic testing practices and research. Then, we can take that critical next step of supporting our healthcare partners who develop novel genomics-based therapeutics to benefit everyone.
If you’d like to learn more about InformedDNA and the expert genetics services we offer for health plans, healthcare providers or pharmaceutical companies, please get in touch – just fill out the short form below, or give us a call: 844-846-3763.