Introduction 

Beyond the role of advancing oncology research, clinical trials are also instrumental in enhancing cancer awareness and patient education. Effective communication among patients, physicians, and research staff is vital for clinical trial success. The discernible shift toward patient-centric cancer clinical trials is both an academic preference and a move endorsed by regulatory authorities like the U.S. National Institutes of Health (NIH) and the European Medicines Agency (EMA). Clinical researchers ‘ deeper engagement with patients and patient advocacy groups effectively activates a reciprocal flow of awareness and education as patient insights help sponsors and CROs design patient-centric trials and share their knowledge and expertise through patient-friendly resources and educational material.  

 

Effective Communication During Clinical Trials  

Oncology clinical trials are varied and increasingly complex, necessitating clear and effective communication among participants, physicians, and trial staff. A recent study by Forbes et al. explored patient experiences in a cancer clinical trial and found high patient satisfaction (> 90%) with the information provided and communication with trial staff across different stages. Many participants reported their experiences as above and beyond standard care. Further, participants felt written trial material could be overwhelming and valued verbal communication with research staff and physicians. The study concluded that establishing effective communication practices among trial staff and physicians with patients may positively impact patient accrual, retention, and satisfaction. 

 

Clinical Trial Communication Toolkit 

An effective communication toolkit, created for the patient audience, includes basic information about what a patient can expect from the trial, resources to help educate patients on their condition and trial requirements, and uses language that resonates with what concerns or motivates them. Keeping in mind that only some people are health literate, educational documents and clinical trial recruitment and site materials, e.g., advertisements and outreach materials, should start with understanding how patients talk about their condition.  

Clinical research plays a role in educating cancer patients about interventions outside the standard of care. In response to a survey of 4,000 patients, patients reported that one of their key motivations for participating in clinical trials is access to a drug, treatment, or device that could extend or improve quality of life.  

Efforts to engage patients and involve civil society organizations such as patient advocacy groups come full circle as studies have found that active patient involvement can lead to more understandable educational resources and patient-friendly trial material, improved patient experiences, and potentially higher patient adherence. In addition, patient feedback on informed consent material contributed to developing clear, patient-oriented explanations of trial specifics and legal documents.  

 

Translation of Research Findings into Easily Accessible Messages  

To be impactful, research findings, past and ongoing, are translated into easily accessible messages that resonate with cancer patients, their caregivers, and the general population. The involvement of patient advocacy groups is recognized as being critical to cancer research, contributing to trial design, improving patient experience, and facilitating the dissemination of research findings, e.g., advocating cancer clinical research with policymakers.  

 

Reciprocal Flow of Cancer Awareness and Education 

Collaborations between patient advocacy groups and clinical researchers benefit patients navigating clinical trials. On the one hand, sponsors and CROs have in-depth knowledge, expertise, and experience in cancer research. On the other, patient advocacy groups bring a personal, often first-hand, account of the challenges experienced on the cancer patient journey. In this regard, cancer awareness and education can be seen as a flow in both directions – patients and patient advocacy groups share their insights with clinical researchers, which in turn help to design patient-centric clinical trials emphasizing patient engagement and the provision of patient-friendly resources and educational material.  

 

World Cancer Day and Diversity in Clinical Trials 

Possibly the most well-recognized cancer patient advocacy initiative is World Cancer Day, the international day conceptualized to raise cancer awareness and encourage prevention, detection, and treatment. The World Cancer Day theme for 2022 – 2024 is ‘Close the Care Gap,’ a commitment to cancer care equity. This year, the ‘Close the Care Gap’ campaign will challenge leaders and policymakers to address the root causes of inequity.  

Clinical researchers can directly affect cancer care equity by prioritizing diversity, equity, and inclusion in the design and execution of clinical trials. Sponsors and CROs can enhance the diversity of clinical trials by giving a voice to cancer patients and their families, including underrepresented populations, and working with the global cancer community. To bring more diverse representation into clinical trials in the U.S., the American Society of Clinical Oncology (ASCO) launched its Equity, Diversity, and Inclusion Action Plan, while the Food and Drug Administration (FDA) released a guidance document for industry.  

 

Cancer Education Resources 

An example of resources created to support people in their cancer journey and close the care gap for underserved communities is Pfizer’s “This is Living With Cancer” effort. The initiative includes resources, education, and encouragement for patients and their caregivers. As with other sponsors, Pfizer recognizes that patient centricity and increasing diversity in clinical trials will help address disparities in care. To this end, Pfizer partners with advocacy organizations like the Tigerlily Foundation to make clinical trials more inclusive for women of color.  

 

Cancer Clinical Trials and Biomarker Testing Awareness 

A study by Li et al. on patient-centric cancer clinical trials highlighted issues that arise even before a patient is recruited. Cancer patients who lack awareness of clinical trials in general and access to biomarker testing, in particular, are likely to be missed from biomarker-driven oncology clinical trials, leading to a lack of diversity in such trials. The authors recommend increasing awareness of biomarker testing through physician and patient education and addressing other barriers to access, e.g., through tech adoption.

 

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