How do we address the barriers to cancer research participation among patients, especially underrepresented populations? How do we create partnerships with underserved communities to foster more trust, greater recruitment, and better retention rates among these populations?
In our most recent People of Precision Health podcast episode, we sat down with Porscha Johnson, PharmD, CPGx to address these questions.
Currently, Dr. Johnson leads Northside Hospital’s genomic oncology advisory board and has been developing their precision oncology program. She specializes in cancer pharmacogenomics to understand how patient genetics informs their response to medications. In addition to overseeing a team of oncology pharmacists and focuses on educating her patients about therapeutic treatments for cancer.
When pointing to the biggest obstacle to optimizing care, Dr. Johnson cited a lack of understanding, saying, “Genomic literacy has been the most challenging obstacle to overcome not just for our providers, but for patients and caregivers as well.” She remarked that providing advocacy resources to educate these different groups as succinctly as possible on things like the difference between genetics and genomics, how certain testing impacts health and life insurance as well as people’s jobs, as well as how much control people have over their healthcare data can empower them to move forward in the care journey.
For many in the cancer care continuum and even beyond, there’s been the view that suggesting a clinical trial to a patient is a last-ditch effort. “It’s not at all; it’s actually included in the standard-of-care guidelines and should be spoken about from the very beginning of a patient’s care journey,” Dr. Johnson said. When having these conversations around participation in cancer studies alongside more conventional treatment avenues. For this, Dr. Johnson noted above all the importance of creating an open and safe environment where patients feel supported.
To address underrepresentation of minority groups in clinical studies, Dr. Johnson recommends engaging with community organizations to leverage the trust of community leaders and to tailor culturally relevant recruitment strategies to target populations. Establishing partnerships that prioritize inclusivity such as with historically black colleges and universities (HBCUs) can be a proving ground for establishing the benefits of active participation in studies. Actively listening to community concerns can move the needle on participation rates from underrepresented populations. Recognizing the impacts of social determinants of health and how disparities in housing, transportation, historical discrimination and a general fear of the unknown are also key to educating the medical community to address care more empathically.
Aside from racial/ethnic and cultural barriers, there are barriers as it relates to socioeconomic status, age, as well as gender identity that may play a role in discouraging participation or neglecting to address the needs of specific populations. The hope is that addressing these barriers from a more culturally informed and trauma-aware perspective can help to improve retention rates. But this is data that, Dr. Johnson notes, must be collected and analyzed in health systems willing and ready to address inherent disparities in order to prove the impact of these improvements.
In describing how to overcome some of the more significant barriers to participation, Dr. Johnson cited the slogan “nothing about us without us” as a principle whereby underrepresented groups need to be actively involved in the design of research studies and in the creation/testing of medicines that address their populations’ needs. “Having a patient advisory board or focus group can help researchers and clinicians to understand what challenges or concerns that potential participants have,” Dr. Johnson said.
Dr. Johnson pointed out that collaboration with patient advisors and focus groups needs to be an end-to-end approach. “Before you even begin to recruit, you need to make sure that the literacy, comfortability, and willingness to help their community is there with focus groups of patient advisory boards,” she said. And the momentum needs to be kept throughout the clinical trial development, the research process, and at the study’s closeout to understand what went well and what warrants improvement. It is also important, she noted, to tell the patient advisors how they contributed to the overall results of recruitment, retention, and the ultimate outcomes of the study.
Listen to the full podcast episode here:
Among the concerns around participation, data privacy and stigmatization loom large for underrepresented populations. For that matter, she mentions that many underrepresented people don’t feel comfortable relaying their financial issues or childcare issues with a provider at hand because the provider may not look like them or represent the same or a similarly marginalized community. This, Dr. Johnson highlights, demonstrates a greater need for a diverse medical workforce and research teams more specifically. She points to her experience, saying, “As a black female, I’m a double minority. And I believe my experiences there as well as my leadership role can contribute to a more inclusive and welcoming environment for people to talk with me and lower their guard within the medical community and the broader clinical trials space.”
Again, she stresses that health literacy is an important barrier, which needs to be addressed by introducing and explaining the clinical benefits of participation in research as well as some of the more abstract benefits such as benefitting one’s family and community by contributing to equitable research opportunities. Language barriers are a frequent issue that can be addressed by translating consent forms and clinical trial packets.
Transportation issues can be addressed with vouchers by working with ridesharing services such as Uber or Lyft, or taking a more hybrid/decentralized approach to studies to decrease the amount of time and money participants spend traveling to clinical sites. In terms of encouraging participation from populations that are farther away from cancer centers, a mobile clinic unit or a hub-and-spoke model may be appropriate to allowing them to come into a satellite hospital or clinical site that is closer to them. “Meeting patients physically where they’re at may be a way to address some of those barriers,” Dr. Johnson said.
Ultimately, Dr. Johnson feels it is important to address to patients the potential that the clinical benefits of experimental interventions may well outweigh the risks and have the potential to provide greater safety and efficacy than what is already available as the current standards of care.
Dr. Johnson espoused the great promise that digital methods hold in the research space, citing interactive platforms like websites where people can speak to care navigators in real time to address their needs and challenges. She addressed the great opportunity for social media to serve as a platform for recruiting and educating potential participants for trials and research.
She mentioned the promise of smartphone apps to give access to genetic and other test results that patients can then easily share with their providers and as a platform for feedback and engagement from participants. For instance, if a participant chooses to withdraw consent and end their participation with a study, apps and digital platforms could serve as an easy resource to understand any challenges that research teams could help mitigate to retain participants.
Digital platforms also allow for the delivery of patient advocacy materials such as videos that serve as empowering educational materials for patients and their caregivers. They also allow, she said, the ability to easily pre-screen patients into trials, and to serve as data repositories for patients’ genomic and genetic results, and for patients, caregivers, and clinicians to search for research studies or newly approved targeted therapies.
AI is already proving to help with a lot of these processes, particularly around the administrative side of research to assess and strategize for quality improvement processes for better study feasibility or overall clinical outcomes. “Most importantly,” she said, “I think this technology affords us the possibility to better report on the demographics of a trial and to make that data publicly available to promote transparency and accountability, thereby mitigating trust among underrepresented communities.”
In speaking to integrating genomics into cancer treatment, Dr. Johnson notes that the future of precision medicine is already here—it’s the headwinds to these novel solutions that stand to erode with time. She remarks that this is largely due to the lack of awareness around the patterns that professionals in the field have managed to show around how genomics and genetics play a role and what clinical applications have arisen from these discoveries.
“Some of these have been very unknown significance, but recently we’ve seen these insights become prognostic or pathogenic. In many cases, you can now bypass the standard of care or trial-and-error via preventative screening or more targeted therapies,” she said. Her ultimate goal to realize the integration of precision medicine into cancer care would be universal biomarker testing, but the hurdle for many patients involves having comprehensive insurance coverage. But Dr. Johnson notes that there are many organizations that provide grant funding or assistance for these testing mechanisms that unlock more informed treatment decisions.
She also reiterates the value of bringing research to patients away from traditional academic research organizations and cancer centers into more community-based approaches like mobile clinic units. This involves eliminating the stigma of community-based care as an inferior option to centers of excellence. “There are just as good if not greater providers in the community setting because they want to serve those people in the communities disproportionately affected by disadvantage,” she said.
Ultimately, Dr. Johnson notes the value of genomics and genetics not just in cancer care but in cardiology, pain management, and other clinical areas. She firmly asserted that in 10 years, patients will be able to easily access germline testing and other tests. And this will be fully integrated into EMR systems, the trust of care providers, policymakers, and insurance carriers.
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