ASCO 2022 | Improving Equitable Access to Cancer Care
The 2022 American Society for Clinical Oncology (ASCO) annual meeting hinted at the changes that may be coming to oncology trials and the larger fields of clinical research and healthcare. There is much work to be done to ensure equal and diverse representation in cancer research. Racial inequities, inadequate LGTBQ+ representation, and ageism are longstanding barriers to properly-represented cancer trials. Additionally, the lack of care access both within countries (urban vs. rural divides) and internationally has created a dearth of availability and affordability of critical treatments.
Experts at ASCO 2022 set the stage regarding these cancer disparities and offered necessary solutions to make oncology studies more diverse and accessible for all patients.
Racial Disparities in Cancer Care
One of the biggest findings presented as ASCO 2022 was a 2020 meta-analysis confirming that when offered, Black, Hispanic, and Asian patients participated in clinical trials at the same or greater rates than white patients.
“These findings upend several conventional beliefs about cancer clinical trial participation, including that Black patients are less likely to agree to participate and that patient decision-making is the primary barrier to participation. Policies and interventions to improve clinical trial participation should focus more on modifiable systemic structural and clinical barriers, such as improving access to available trials and broadening eligibility criteria.”
This finding highlights the importance of accessibility and equity when planning clinical trial sites and inclusion/exclusion criteria. The same investigator found in another 2020 study that over 77% of clinical trial patients do not participate because there are no onsite trials for which they are eligible. Simply offering oncology trials at locations with diverse populations and putting awareness efforts into these areas will drive more diverse racial, ethnic, and minority participation in clinical trials.
Additional solutions from the US Cancer Centers of Excellence’s best practices include gathering ethnically diverse patient input on potential trials, engaging community healthcare providers as partners, and outreach to community groups of ethnically diverse patient populations.
LGBTQ+ Representation in Oncology
LGBTQ+ representation was a key focus among ASCO speakers. Clinical sites and practitioners must earn the trust of their LGBTQ+ patients by listening and treating them the same as cisgender patients. This starts with inclusive wording. Be mindful of the language being used during appointments and on patient forms. Using correct terminology is not only respectful to patients, but it also has a profound impact on clinical research.
For example, the issue of conflating one’s assigned sex at birth with one’s gender is a common oversight. The terms sex and gender are incorrectly used interchangeably, which can affect inclusion/exclusion criteria and even lab values.
In many cases, sexual orientation and gender identity are left off of federal and state health surveys altogether. Not only is this alienating to LGBTQ+ patients and discourages participation, but it also makes it difficult to establish the true LGBTQ+ disparities in clinical research. The differences in how different parties collect diversity data also complicates the data standardization process, which can inhibit efforts to plan effective oncology clinical trials.
It is imperative to collect the proper sexual orientation and gender identity data for patients; this can be done by including the following data points on forms:
- Sex at birth
- Current gender
- Sexual orientation
- Medical history of intersex conditions or a difference of sex development
Age Equality in Cancer Care
The population of older U.S. adults is rapidly increasing and is expected to nearly double by 2060. This population is also becoming more racially and ethnically diverse, with African American seniors projected to triple and Hispanic seniors projected to quadruple. These same trends are being reflected in cancer demographics. When compounded with existing racial and socioeconomic inequalities, inadequate representation in clinical trials can create large, underrepresented populations of older adults with cancer.
In addition to underrepresentation of older minority patients, senior patients are often excluded from clinical trial participation due to age limitations. Such criteria creates significantly underrepresented cancer clinical trials, since most trials disproportionately enroll younger, healthier patients with less comorbidities.
ASCO speakers emphasized that applying a health equity lens to cancer research with older adults is paramount. Older patients—especially those from historically marginalized backgrounds—must be represented throughout all stages of cancer research. The industry must focus on systematically collecting sociodemographic data (including age), implementing age-friendly health systems, preparing older adults to advocate for health equity, and creating a team-care approach for older cancer patients.
Rural Access to Cancer Care
The rural United States makes up nearly 20% of the country’s population, but only has between 3-11% of the country’s oncologists. When recruiting patients for cancer clinical trials, there is rarely proportional representation for rural communities, leading to underrepresented populations. Some of the most prominent barriers include lengthy travel and financial burden traveling to faraway clinical sites. In today’s landscape of decentralized clinical trials, the pronounced digital divide and lack of internet and cellular service in remote areas makes it difficult to raise awareness and adoption of decentralized solutions.
Improving healthcare access in rural communities means building relationships with local stakeholders—clinical sites and patients alike—to bring forward solutions, like creating new site plans to better support rural-serving healthcare providers and potential investigators. Better patient education and a larger focus on patient-centric recruitment and retention are also needed to help close the rural divide in oncology research.
Global Access to Cancer Care
A major aspect of diversity efforts that often gets overlooked in healthcare is the disparity between low and middle-income countries (LMIC) and high-income countries (HIC). Over half of the world’s cancer diagnoses occur in LMICs, and this is likely an undercount due to the lack of diagnostic and treatment facilities. But only 10-20% of clinical trial participation comes from LMICs, and it takes much longer to gain access to the drugs they help develop when compared to HICs. Most cancer treatments in LMICs are legacy chemotherapy treatments, as the majority of these countries lack targeted immunotherapy treatments. And prices for newer drugs are out of reach for most low income populations.
The startling lack of access to live-saving cancer treatments, combined with the low participation rates in clinical research, highlight the worldwide discrepancies in healthcare and cancer care. ASCO presenters offered many possible solutions, including increased use of telemedicine and patient-centric technologies to alleviate burden on oncologists and increased participation in clinical trials with the drug remaining available to patients after the trial’s completion. Another option is to broaden the number of research facilities and invest in private research groups to bring more cancer sites to LMICs instead of Europe and North America. Such sites can run oncology clinical trials for lower costs while treating more diverse patient populations.
ASCO 2022’s findings illustrate the importance of improving diversity across different concentrations. Efforts for equitable cancer research must continue to expand to better represent patient groups across race, ethnicity, sex, gender, age, and location. Plans for new clinical research sites need to consider the locations of minority populations, as well as rural and underserved communities to help close the cancer care gap. Decentralized clinical trial capabilities can ease patient burden in situations where travel is difficult or costly. Within cancer clinical trials, greater respect and sensitivity for the individual patient is critical. And data standardization allows us to derive greater value from the data when planning clinical trials, allowing for greater efficiency and further improving inclusion efforts. Together, such changes will make global oncology efforts more equitable and more productive.
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