A Roadmap For Improving Diversity in Cancer Research

Shelli Pavone, CEO & President, Inlightened

Last month was Cancer Research Awareness Month, which is a great time to celebrate recent findings that the number of adults enrolled in oncology clinical trials has increased – nearly twice as high as past estimates – while also reflecting on the fact that we still have much work to do in overall and proportional clinical trial enrollment. Highlighting the work that still needs to be done, a recent analysis revealed that individuals who participated in new drug trials were not representative of the U.S. population. 

Meanwhile, the need for precision cancer therapeutics is in stark view: the American Cancer Society anticipates more than 2 million new cases of cancer in 2024. In order to address that growing need, we must improve our ability to enroll and complete trials. That requires equipping trial sites, providers, and patients with the tools they need to promote and sustain clinical trial enrollment and retention. We must proceed thoughtfully, with much consideration given to proportional representation in clinical trials, so that the benefits produced by the cancer research enterprise accrue to all patient populations.

While the road to solving these decades-old problems is long and complex, digital tools can – and should – play a role in helping us advance down the path faster, navigate intentionally and ensure everyone is part of the journey. 

Trial enrollment 

The first step is to facilitate the ability to enroll in a clinical trial. After all, providers can’t recommend or enroll patients in a trial they don’t know exists. Therefore, we must start with centralized information about trial availability and effective site-based outreach. First, we need to leverage digital tools to enhance and enable peer-to-peer outreach and strip down barriers to clinical trial information that exist today. Second, we need to create a centrally-located clinical trial database, so a patient or provider’s location does not impact whether they have access to information. Third, we need tailored outreach plans for all patient populations, so they receive information in their preferred language, via their preferred channels and mediums (e.g., print vs. video) and when they are best suited to consume it.

At a more cultural and systemic level, we need to integrate research into care delivery. We must begin moving towards a future in which, when reviewing treatments and care plans, clinical trials are discussed and considered as regularly as chemo and immunotherapy. Diagnosis workups should support trial-matching, and trials should be considered a viable care option.

Retaining patients and conducting trials  

Once we have more equitable and representative enrollment, we must focus on retaining patients and conducting the trials to carry those improvements through. First, we must expand and prioritize diversity across study sites. To reach a broader and more diverse group of patients, we need to conduct trials in community health settings, not just academic institutions. Eighty-five percent of Americans receive their care from community health systems; we must engage and enable them to reach patients where they are. 

Second, diversity and representation are not only important for patient populations; it’s also important for site personnel. We cannot expect a more representative patient population if the people running the trials are homogenous. 

Third, the patient needs to be put at the center of everything we do. We need tailored education, integration of care and research visits and transparency when it comes to their data/ownership. 

And, finally, filling the data gaps for historically underrepresented populations must be a priority. 

To facilitate that progress, technology can and should be integrated intentionally throughout the process – from research to delivery. 

While we still have a long road in front of us to reach equitable access to clinical trials for all populations, there is a lot to be hopeful for:  

Current data show that an estimated 7.1% of adults with cancer participated in treatment trials between 2013 and 2017, which is more than two times higher than the historical estimates of 2%-3%. 

The Cancer Moonshot is mobilizing efforts toward achieving two clear goals that the President and First Lady set: to prevent more than 4 million cancer deaths by 2047 and improve the experience of people who are touched by cancer. Within the Cancer Moonshot, CancerX is focused specifically on boosting innovation and developing digital interventions for cancer care delivery. 

As with any big change, there is always room for improvement. Looking to the future, we must make sure: 

  • We understand how all populations are impacted by the disease;  
  • Everyone has equal access to trials and treatment;  
  • Everyone has a voice/seat at the table; 
  • We prioritize a culture of learning, so we can make improvements as/when necessary. 

As we move beyond Cancer Research Awareness, it’s important to take a moment to celebrate the immense progress we made and commit to the obstacles we still need to overcome. 


About Shelli Pavone

Shelli Pavone is the President and Co-founder of Inlightened. She has more than 20 years of commercial experience in healthcare and is dedicated to partnering with clinicians and innovators alike to help shape the future of the industry. Shelli was named a Forbes‘ Next 1000 and is a graduate of The Ohio State University, with a BS in Psychology.