What it takes to make cancer research more inclusive

The drug discovery sector is working to address cancer disparities. Anita Ramanathan examines the importance of inclusivity and diversity throughout the drug discovery and development process. 

While the risk of cancer is universal, some groups are disproportionately affected by cancer compared to others. Disparities resulting from genetic, environmental, social, and economic factors increase cancer risks in certain subpopulations, and negatively affect their health outcomes. These observations may come to light in the clinic, but these disparities can be attributed to every phase of the drug development pipeline – clinical trials, translational research and, ultimately, drug discovery. 

In recent years, governments, institutes, pharma companies, and funding bodies have taken significant measures to proactively address cancer disparities. Here, we highlight the efforts being made to achieve cancer health equity at different stages of drug development. 

Cancer health disparities and underlying contributing factors 

Numerous underlying factors, ranging from genetics, environment, lifestyle, co-morbidities, income level, ethnicity, and beyond, converge to influence an individual’s risk for cancer and how the disease is managed. On the other hand, existing practices in drug development, starting from the types of studies that receive funding to patient populations recruited in trials, also directly impact health outcomes. 

Disparities due to limited access, environment, and social determinants: “The causes of cancer disparities are exceedingly complex and interrelated,” shares Dr Tiffany Wallace, Program Director at the Center to Reduce Cancer Health Disparities, National Cancer Institute (NCI), USA. “In addition to barriers in access to healthcare, other factors contribute to cancer disparities, including socioeconomic status, geographic location, environmental disadvantage, structural and systemic racism, biology, ancestry-related risk factors, diet and lifestyle, and persistent co-morbidities. Research supporting a better understanding of how these factors intersect continues to be critical in addressing and eliminating cancer-related disparities.” 

Individuals living in rural areas with limited local support may need to travel for hours to get access to specialised screening or pathology tests provided by centres of excellence located in large cities. In addition to the time and costs involved in obtaining a diagnosis, taking time off work in the absence of paid medical leave to manage treatment and recuperate can further exacerbate the financial burden of the disease. 

Moreover, the environmental conditions of a locality directly influence the health outcomes of its residents. Neighbourhoods categorised as food deserts may not have access to affordable healthy foods. Cancer risks also increase in areas with water contaminants or polluted air. As it turns out, the socioeconomic status of families is closely linked to residential zip codes and the nature of living conditions in the area, making it even more challenging to address this issue.  

A recent report released by Cancer Research UK1 noted that people living in more deprived areas of the UK are more likely to get cancer, accounting for 20,000 extra cancer cases each year. This disparity, in part, stems from smoking rates and obesity, both of which are higher in deprived communities. Additionally, literacy levels can also contribute to overall health outcomes. For instance, groups with higher educational degrees tend to exhibit improved health awareness and are more likely to proactively enrol in cancer screening tests or recognise potential symptoms in the early stages. 

Inherent biological disparities: Genetic variations and differences in tumour biology may also contribute to a higher incidence of cancer, differences in pathophysiology, and varied responses to treatment. Additionally, existing co-morbidities such as type 2 diabetes that are more prevalent in certain ethnicities can increase cancer risks or worsen symptoms. As it relates to clinical support, cultural labels (race, ethnicity, etc.) used in patient intake forms can influence clinical decisions or treatment protocols. Often, in an attempt to flag risks associated with the disease, a scoring system is used if the patient identifies with a particular race or ethnicity. However, these social categories are rather arbitrary and don’t necessarily correspond to the underlying molecular biology of the patient, risking misguided clinical care. Instead, molecular markers are more accurate indicators of the patient’s associated risks. 

“People are beautifully different. We’d be doing a big disservice to patients if we extrapolated the findings from one patient group to another with a different genetic make-up,” says Dr Anastacia Awad, Head of Diversity and Inclusion at Novartis Institutes for BioMedical Research. “We’ve only just scratched the surface in understanding how genetically diverse patients naturally are. Learning more about this inherent genetic diversity at a basic level can help us decipher how the disease manifests differently in certain groups, giving us the knowledge to then design specific drugs.” 

Disparities in healthcare and clinical outcomes: In many countries, the insurance status of an individual often determines the healthcare options available, and in turn, influences the patient’s health journey. Those on lower-tier plans or without health insurance may not have the opportunities to take recommended screening tests that catch early-stage cancers. Even in countries with universal health coverage, the strain on the healthcare system can make it challenging to perform a thorough assessment on every patient due to which mild symptoms may go unnoticed. Unfortunately, in both these instances, getting diagnosed with late-stage cancers is more likely, ultimately limiting the treatment options available to the patient. 

Additionally, the lack of diversity in patients participating in clinical trials can also contribute to cancer disparities. Results from clinical studies with poor representation may not apply to the general population. At present, gender or ethnicity representation isn’t a mandatory requirement for designing clinical trials. “Historically, clinical trials haven’t been designed to account for observed disparities resulting from race, sex, or even socioeconomic status,” notes Dr TJ Bowen, Chief Scientific Officer, Deep Lens. “This imparts significant variability from one trial to another, further widening the disparity. In recent times, however, governing bodies and pharmaceutical sponsors of clinical studies are starting to identify this as a serious issue and are beginning to enforce representation in trial design.” 

Underrepresentation in the workforce 

The lack of diversity in cancer health extends beyond clinical trial participants. Representation disparities exist among researchers, clinicians, clinical trial investigators, and supporting staff. The number of professionals across the drug development pipeline belonging to racial or ethnic minority groups rarely represents the percentage seen in the general population. This, in turn, brings an unrealised risk to the scientific process – unique perspectives and new ideas voiced by underrepresented individuals may go unheard.  

 For decades, funding bodies have used performance-based criteria to offer grants to deserving researchers, awarding ‘the best’ research proposals among received applications. While this might seem like a neutral or logical way to make a decision, it doesn’t take prevailing underrepresentation or intangible career barriers into account. “Seeing the disparities in cancer research funding has been a tipping point for many organisations, including ours. As funders, we’re integral members of the scientific ecosystem and it’s our responsibility to address this,” says Dan Burkwood, Director of Research Operations and Communications, Cancer Research UK. “Moreover, if funding is only given to a homogenous group of researchers sharing similar backgrounds, we risk asking a similar set of scientific questions. Diversity in the workplace brings new perspectives to current problems and fosters diverse thinking in research as well.” 

Efforts to diminish disparities: From laboratory research to clinical trials 

Cancer disparities seen in the clinical or research stages of drug development have, by far, been observations based on available data. Diminishing these disparities, however, would require committed efforts to investigate the underlying root cause to eliminate or better manage it, or devise fitting solutions that directly address the problem.  

Below are a few examples of how research groups, institutes, and companies are taking assertive action to prioritise cancer health equity. 

Focused research on cancer health disparities 

In an effort to better understand the biological underpinnings of cancer disparities, funding bodies now have dedicated programs that specifically study cancer health disparities at molecular, translational, or clinical levels.  

“In recent years, our centre has worked to increase diversity in precision medicine initiatives supported across the NCI,” says Dr Wallace. One such example is seen within the NCI’s Patient-Derived Xenograft Development and Trial Centers Research Network (PDXNet), a collaborative project to conduct large-scale model development and preclinical testing of targeted therapeutic agents to inform early phase clinical trials. Dr Wallace continues: “In 2018, two research centres joined the existing PDXNet with a focus on developing models from racial/ethnically diverse populations and conducting disparities research. As a result of these centres, researchers have access to more models and data that may help them both to better understand how underserved populations may respond to targeted treatment regimens and to advance translation of equitable precision medicine approaches.” 

In collaboration to support scientific research into genetic diversity and heterogeneity in populations across Africa, GlaxoSmithKline and Novartis announced the Project Africa GRADIENT in 2021. “There’s more molecular heterogeneity within the African continent than anywhere else in the world. A person living in Zambia, for instance, may have a different genetic profile and drug response compared to another individual in Ghana or Zimbabwe,” says Dr Awad. “By grouping all African sub-populations into the category of Black, we’re underserving patients.” As part of this initiative, African genetic diversity projects, proposed by leading African scientists, will be supported by way of fellowships, research funding, and seed funding. To strengthen the scientific capabilities of lower-resource communities, this project will also provide technical training and mentoring to early career African scientists. 

Democratised access to clinical trials 

Patients receiving cancer treatments prefer to get clinical support closer to their homes. However, if located in areas distant from central comprehensive cancer centres, this would also mean missing out on options for clinical trial participation despite being a promising candidate. Losing out on these opportunities not only drastically affects the patient’s clinical outcome but, from the perspective of clinical trial design, also overlooks the eligible patient pool located around city outskirts.  

One way to democratise access to clinical trials regardless of location is to use technology. “Our goal is to bring trials to the patients’ communities instead of requiring them to travel long distances to participate,” says Dr Bowen. “There are thousands of local community practices that would like to run clinical trials. But they’ve been disregarded in the past because there just wasn’t enough volume of patients to run a study. It was, therefore, considered cost-prohibitive for pharmaceutical sponsors to set up clinical trials in these locations. We can now resolve this problem using our AI-enabled patient recruitment platform.” Using data gathered from hundreds of thousands of patients at the time of diagnosis, the Deep Lens AI platform is able to identify and recruit patients that qualify for trials at community practices across hundreds of locations. With qualified patients assembled, clinical study sponsors can now begin trials closer to where the patients live. 

Another way to improve access to clinical trials is by ‘decentralising’ them. Because clinical trial activities are often concentrated in cities, certain demographics benefit more than others. To resolve this discrepancy, pharma sponsors of clinical studies are now actively working towards decentralising trials to make patient participation easier. This would entail remotely engaging with underserved populations by shipping clinical trial packages directly to patients’ homes. The patients can then liaise with local doctors and health centres in getting basic clinical support while being monitored globally as part of an ongoing decentralised trial. Contrary to traditional trials, these decentralised approaches have the potential to boost patient enrolment beyond geography, increase diversity within the recruited patient population, and minimise time and cost burdens on the participating patient. 

YOUR TURN: WHAT CAN I DO TO MAKE A DIFFERENCE? 

 Experts share one actionable step you can take today to make cancer research more inclusive. 

 Go from passive to active 

“We need to challenge ourselves to be active participants in making cancer research more inclusive rather than being passive observers. Remember, this is an issue that affects all of us. No matter what position you’re in – a researcher, a leader, or a funder – it’s likely that you’ll spot inequalities or underrepresentation in certain areas. During these instances, ask yourself, ‘what can I do to address these disparities?’  

Whether it’s introspection about inadvertent biases that went unnoticed for so long or acknowledging how your colleagues may be having an entirely different experience in the same job, it’s important for us to actively participate in the solution instead of distancing ourselves from this complex problem. The simple step of engaging in personal refection makes one realise that small actions can actually make a big difference.” 

  • Dan Burkwood, Director of Research Operations and Communications, Cancer Research UK 

 Be intentional about accessibility 

“Design clinical trials with the intention of making them more accessible to patients. Typically, a site where clinical studies were once performed will be approached over and over again for future trials, regardless of where patients are located. This practice makes trials inaccessible to a large population of patients. It’s therefore important to carefully look at patient data and distribution. If, for example, a certain demographic represents 30% of the general population, but is only 8% of the group recruited in an ongoing study, this can pose a big risk when the therapeutic enters the market. To fix this, we need to go where the patients are and design studies that make it easier for them to be included. 

 Secondly, we need to make information about clinical trials more accessible. Currently, there’s a lot of useful information available that, unfortunately, isn’t being explained at a basic enough level to encourage patients to participate. We need to rework our messaging and provide patients with well-crafted resources that clearly explain the benefits of different therapies.” 

  • Dr TJ Bowen, Chief Scientific Officer, Deep Lens 

 Increase representation at all stages 

Whether it’s engaging in basic research or conducting large-scale community-level programs, increasing representation of underserved populations in all precision medicine efforts is critical to ensure that all research advancements can be shared equitably across patient populations. Where possible, research training opportunities can be made available for individuals from underrepresented populations across the academic continuum to strengthen career paths toward cancer research. 

  • Dr Tiffany Wallace, Program Director, Center to Reduce Cancer Health Disparities, National Cancer Institute 

 Dig deeper during literature searches  

“One of the first steps we take as scientists is doing a literature search on our topic of interest. At this stage, why not take one extra step by typing in the words ‘health disparity’ after your research topic? You might find interesting publications that present new opportunities or may learn about genetic variations you weren’t familiar with. These are new angles that can be considered. It’s also possible that the search yields no results, prompting a ‘pause and reflect’ moment about why that might be the case – perhaps it’s a topic that hasn’t yet been explored? What you uncover from early literature searches can inspire unique research questions in addressing cancer health disparities. 

Additionally, when planning department seminars, invite speakers from underrepresented communities. It helps increase the visibility of their research. At conferences, set up meetings and hear different perspectives from industry colleagues. These are small but tangible steps to improve diversity within the scientific community.” 

  • Dr Anastacia Awad, Head of Diversity & Inclusion, Novartis Institutes for BioMedical Research 
Funded opportunities to improve diversity among researchers 

Funding bodies are now paying attention to gender and racial representation among grant awardees as well as within leadership roles tasked with making funding decisions. “Back in 2016, we noticed that only 20% of our funding committee members were women. Because this broadly reflects the percentages seen in senior professorial positions in the UK, it might’ve seemed typical. But that, too, is a result of barriers that women experience at different career stages in academia,” notes Burkwood who oversees research funding committees at Cancer Research UK. “So, we decided to be more active in increasing female representation. In the last six years, we’ve turned that number around. This year, 45% of our funding committee is female. These numbers are now getting closer to what we see in the general population.” 

Taking action towards eliminating implicit biases or recognising invisible barriers within the interview process is also a priority. “We noticed clear disparities in the outcomes of fellowship interviews. White researchers were more successful than any other racial group,” says Burkwood. “As this interview marks a key career milestone in acquiring an independent investigator grant to advance in academia, this is a critical problem we need to resolve.” Diversity and inclusion experts are invited to observe these meetings and offer recommendations for change, along with feedback gathered from past interviewees. Burkwood continues: “This is a much more complex issue entrenched deeply within the society we live in. But we’re certain that we can use our funds and our reach to bring about a positive change.” 

Educational institutes and pharmaceutical companies, too, are contributing to scholarships, fellowships, and training opportunities for underserved groups. “At Novartis, we made a 10-year commitment of over $33 million to address health disparities,” says Dr Awad. “As part of this Beacon of Hope initiative, we’re teaming up with historically black academic institutions to offer mentorship, training, and infrastructure support.” 

Achieving Tangible Change: Metrics to Measure Progress 

Progressing towards cancer health equity across all facets of drug development is a lofty endeavour that will continue for years to come. At times, bringing about change in diversity and inclusion may seem almost intangible or abstract, with no clear barometer to measure progress. However, as with any other long-term project, setting key metrics or success indicators along the way can make progress more tangible.  

Make sure diversity is top of mind: When it’s out of sight, it’s out of mind. Internal goals towards achieving diversity and inclusion in any aspect of drug development will need to be re-stated regularly during team meetings and made a priority by team leaders.  

Pay attention to numbers and percentages: Just like in experimental measurements where the signal is quantified by minimising the noise, in these projects too, setting clear metrics is a necessary step. In doing so, pay attention to starting numbers and percentages so accurate comparisons may be made later on.  

Being aware of the groups being underserved and what percentage of the population they comprise in a given country is a good place to start. Additionally, knowing if the incidence of a particular cancer subtype overlaps with another disease that is prevalent within a community may also help determine risk factors. Another relevant metric is to document clinical trial participation numbers and track potential shifts in the number of underrepresented patients.  

Set scalable targets: Expecting considerable change overnight is unreasonable. Instead of aiming to hit a concrete number (for example, a team with 50% women), set scalable targets over shorter periods (for example, 15% in the first year, 20% in the second, and so on). This will make it easier to identify current problems, troubleshoot them, and gradually implement improved strategies. Each milestone will also present unique challenges that need to be resolved before moving to the next level. 

Eliminating the many contributors to cancer health disparities will be a long and arduous undertaking, but one that warrants immediate action. While systemic social and economic inequalities are challenging to address without extensive policy changes, we’re able to spark visible change in areas that we can influence – through the research questions we ask, the studies we fund, the trials we design and the teams we work with. 

About the author 

Anita Ramanathan is a science writer and award-winning speaker based in Bristol, UK. In her capacity as a science writer/editor at several digital publications, including NIH Research Matters, she has crafted dozens of stories buried under numbers and scientific findings. A storyteller at heart, Anita also delivers science communication workshops. 

Included in DDW Oncology Research ebook 

References

1: https://news.cancerresearchuk.org/2020/09/30/uk-health-inequalities-20000-more-cancer-cases-a-year-in-the-most-deprived-areas/

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