Disparities in Cancer Research After COVID-19: Charting the Course from Inspiration to Intervention
When I open my eyes in the morning, hours before my family wakes up, I need a few minutes to collect my bearings. The question that flits across my mind is not whether I have to work today, but where.
Will I need to go to the hospital? And if I stay home, where in my house should I settle down to work? Specifically, where am I least likely to be interrupted by my children (while still being available to mediate an argument or tend to a scrape), or to find myself having a virtual meeting at the same time that my husband is having one?
The truth is that I, like most people in academic medicine, do some kind of work every day of the week including weekends, whether that’s closing a patient’s chart, or writing a grant submission, or reviewing a manuscript. Computers, broadband internet, and VPN connections have liberated work from the workplace while imprisoning us within a 24-7 work culture, one that allows us to access electronic health records and medical journals from home and after hours—a very mixed blessing that I’ve written about before. The line between work and life has been fudged and blurred out of existence for most of us in medicine for years, but now this borderless, imbalanced approach has become the norm for the rest of the world, thanks to the COVID-19 pandemic.
What happened to the professional pause, the psychological break that occurred at the beginning of the US lockdown? All the canceled travel and meetings and elective procedures were supposed to help us rethink the way we were spending our days. Instead, those first few relatively quiet weeks appear to have been the calm before the storm, the gulp of air before the dive. We doubled down, deciding that the best way to fill time liberated from doing operations and seeing patients was to finally write that manuscript whose data had been ready for weeks. Or to think about how to make one’s research relevant to COVID-19. Or to respond to the calls for COVID-19-specific grant applications that suddenly appeared, demanding short turnarounds and promising big payouts. Concomitantly, the pace of research productivity has soared, as journals ramped up their publication processes to respond to the plethora of COVID-19-related papers being submitted.
But to what end? What are the consequences of this surge to produce and publish and promote the science that is being done in the time of COVID-19?
Two months ago, I shared my predictions about how COVID-19 might reframe cancer care for those at greatest risk for disparate screening, treatment receipt, and outcomes. Looking back, my reluctance to assert that we were beyond the pandemic has proven to be well-founded. COVID-19 is resurgent across the country, and we now face a summer of great uncertainty. COVID-19 is here to stay for the foreseeable future, and we must consider how (or even if) the current pace of research can be sustained without further accelerating and spreading the burnout that physicians have been facing for years.
Here are my predictions and reflections on how research within and beyond oncology will evolve in response to COVID-19, how this pandemic has exposed the best and the worst of the research world, and how we can wrap our minds around these paradoxes going forward.
We will have the opportunity to conduct large cohort studies of previously understudied alternatives to pre-COVID-19 standard-of-care treatments.
In anticipation of the COVID-19 pandemic, elective operations—including most of those planned for asymptomatic malignancies—were paused to avoid consuming resources that might otherwise be needed to treat patients with COVID-19. For patients with new diagnoses of breast cancer, for example, neoadjuvant (i.e., preoperative) endocrine therapy (NET) for hormone receptor-positive disease and chemotherapy for HER2+ and triple-negative disease were recommended for patients who would typically undergo oncologic resection first. While rates of neoadjuvant chemotherapy (NACT) had been increasing in the US prior to COVID-19 for various reasons, rates of NET have historically been much lower in the US versus Europe, even as it is typically better tolerated than NACT. Indeed, a significant proportion of those receiving NET are older, frail women with locally advanced disease who are not healthy enough to undergo surgery and/or NACT. But with high rates of NET being prescribed due to COVID-19, we suddenly find ourselves with the largest and most diverse US-based cohort of women using NET for breast cancer.
What are the consequences of this surge to produce and publish and promote the science that is being done in the time of COVID-19?
This situation is just one example of how alternatives to standard of care were pursued in response to COVID-19, providing us with an unprecedented opportunity to conduct pragmatic cohort studies for alternatives to standard oncologic care. I predict that within the next 6 months to a year, we will be seeing the real-world outcomes of these alternative strategies, some of which may prove to be efficacious, less morbid alternatives to current treatment.
Funding for research will become even more difficult to obtain, peer-reviewed manuscripts will be harder to publish, and disparities in who gets funding and who gets published will widen.
A couple of months ago, I submitted a grant with a child on my lap. This grant was one of the dozens submitted by colleagues in my department over the past few months, during which time we set a record for the number of grant applications submitted by faculty in the traditional grant-writing season of May through June.
But this surge in productivity has not been equally distributed. School and daycare closings have reinvigorated a reluctant cult of domesticity in which parents are raising (and educating) their children and running their household while working to afford the “pleasure” of doing so…all at the same time and often in the same place. However, the burden for this balancing act has fallen disproportionately on women. Early data suggest that the productivity of women academicians – mothers of young children in particular – has stalled or declined in the wake of COVID-19. As the new school year looms, plans for in-person attendance are in flux, ensuring that this gendered imbalance of work and home life will persist, as teachers and professors with children struggle to find childcare for school-age children who can’t physically go to school.
Meanwhile, scientific journals are publishing at warp speed as they suddenly stop enforcing journal-specific, time-consuming formatting. Funding cycles are being condensed into ever shorter intervals, with some spanning just a few weeks from an announcement to the deadline for submission. I predict that external funding, which has become increasingly hard to obtain over the past 20 years, will prove even more elusive for those least likely to receive it. These individuals include:
- Those who study disparities (among whom people of color are overrepresented);
- Junior faculty, especially women, with young children as described above; and, I suspect,
- Front-line clinicians working in under-served communities who may have less research expertise and/or resources to support the onerous, resource-intensive activities of grant submission and post-award management.
I predict that we will see a similar pattern with regard to peer-reviewed publications. Excluded individuals will not be at the table when hypotheses are posed, when cooperative groups are formed, and when trials are developed. And yet these are EXACTLY the people who need to be a part of concept development to make sure that future research is attentive to the needs of our increasingly diverse country and the persistent disparities in health that have only been amplified during the COVID-19 pandemic.
We will see an increase in scientific misconduct.
The productivity push I’ve described above will inevitably increase the collective pressure to rush, to fudge and fabricate, to cut corners, and to conjure “important” findings. COVID-19 has allowed would-be authors from across the country and around the world to have their work published in journals such as JAMA, The Lancet, and The New England Journal of Medicine—work that is sometimes more notable for the novelty of the reported findings than for the methodological rigor with which their conclusions were derived. Indeed, when the world is dealing with a brand-new pathogen, even relatively small case series can yield newsworthy information, and for the most part, editorial adjudication and prioritization has appeared to be appropriate.
To keep up with the influx of manuscripts, journals have sped up peer review and publication, a change that is widely welcomed. But this evolution has not been without costs. Errors both unwitting and intentional have slipped through the peer review process and into print. Retractions have been made, and I have no doubt that more will come. What will people sacrifice, in the name of science and for the hope of fame, to publish? We need to find a way to cope with the increase in research productivity across the country and around the world while continuing to hold authors, institutions, and journals to high ethical standards that eschew fabrication, falsification, and plagiarism.
Team science is the future. But who will be on these teams?
The disparities revealed by the COVID-19 pandemic and the simultaneous rise of the Black Lives Matter movement have led to unprecedented collaboration between medical and social scientists. “Social determinants of health” and “systemic racism” are terms that now appear frequently in medical journals and in the lay press. I would like to think that the uptick in the usage of these terms reflects true, deep-seated commitment to contextualizing the health of our patients in the complex world we all share. But if we in academic medicine truly wish to engage with and understand the challenges our patients face, we must partner with sociologists, cultural anthropologists, epidemiologists, and humanists to do so.
In other words, I predict we will need to embrace transdisciplinary team science if we are to tackle big questions in healthcare. But as I allude to above, the question then arises: who will be on these teams? Furthermore, how will we measure effort, and how will we apportion credit? Will we still prioritize first and last authors? As team science evolves, we must reconsider our traditional metrics for scientific contribution and criteria for professional advancement, paying particular attention to the ways in which investigators from underrepresented groups might be excluded or given insufficient credit for their contributions.
As evidence-based innovations are disseminated, we may see a widening in disparities along multiple dimensions with regard to who can take advantage of and benefit from these advances.
As rates of COVID-19 continue to rise in North Carolina and other states in the southern and western US, it’s become increasingly clear that this virus will shape every aspect of public life until a safe and effective vaccine is developed. The process for approving this vaccine will likely be expedited – and for good reason, given the societal impact of COVID-19. I can only hope that the scientific misconduct I discussed above does not extend to this incredibly important innovation.
But even when a vaccine or effective antiviral treatments are approved for general consumption, I’m concerned about who will take – and who will be granted – the opportunity to receive or opt out of vaccination. Clinical trial development must prioritize the inclusion of racially and ethnically diverse participants, perhaps with oversampling of Black and Hispanic persons, given the disproportionately high toll COVID-19 has exacted in these communities. Furthermore, there must be transparency surrounding the expected likelihood of success and the severity of potential side effects. Vaccination compliance has waxed and waned over the years in the US due to the promulgation of debunked studies that implicated vaccines as a cause of autism. Distrust in minority communities of the current administration, combined with lack of longitudinal data, may encourage many people of color to avoid vaccination even once it’s made available. Thus, inclusion and transparency must be part of vaccine development from inception to dissemination.
As we contemplate research during and beyond the COVID-19 pandemic, I hope we will work to actively combat the ills that have emerged during this time while promoting the good. I for one am energized by the spotlight the COVID-19 pandemic has placed on disparities research, highlighting the extent to which it should be incorporated in, and not just remain adjacent to, mainstream clinical investigation.
Here’s hoping this interest proves durable as we continue to navigate the pandemic and move towards a truly post-COVID-19 future.