In June, the IQVIA Institute for Human Data Science convened a virtual panel discussion to explore global trends in oncology and the role of patient organizations in advancing scientific and clinical progress and helping educate and support patients. I hosted the discussion, which featured Audra Moran, President & CEO at Ovarian Cancer Research Alliance (OCRA); Kapila Viges, CEO at MPN Research Foundation; and Jeff Hodge, VP, Precision Medical Oncology, IQVIA Oncology Center of Excellence. The webinar was part of a series aimed at convening, engaging, and empowering patient organizations.

What follows are highlights of our discussion, including three takeaways relevant for patient organizations—even outside oncology—that are seeking to extend and expand their impact.

Innovation Fuels Opportunity and Complexity

I started the discussion by sharing findings from the Institute’s report on Global Oncology Trends 2024 which suggest a strong engine of innovation in oncology. In addition to well-established treatment modalities, there is a growing focus on novel oncology mechanisms. In fact, these approaches—especially cell and gene therapies, antibody-drug conjugates (ADCs), and multi-specific antibodies—have risen to 25% of oncology trials. At the same time, regulators are extending their horizons, with the FDA’s Oncology Center of Excellence’s Project Optimus, Project FrontRunner, and Project Pragmatica as prime examples. These collective efforts are driving a focus on minimum therapeutic dose, earlier lines of therapy, novel approaches to biomarker identification, and new combinations to target drug resistance.

The investments in innovation are paying off: Over the past decade, 88 new solid-tumor treatments and 52 hematological cancer treatments (some with multiple indications) have been launched in the U.S. But the proliferation of treatment options has also fueled complexity for patients as they make their way through cancer treatment options with their providers and oncologists.

The same holds true in oncology clinical trials. Compared to 2019, trial activity and complexity levels were higher in 2023. That includes a 35% rise in the number of endpoints and a 10% increase in eligibility criteria while the number of planned trial sites and countries declined by 16% and 35%, respectively. That has created a “pinch point” that is decelerating enrollment and impacting the clinical development pathway.

Another decelerator is a continued lack of equity – both to include sub-population representativeness  in clinical trials, and to reduce disparities in outcomes . Panelists acknowledged that improving equity remains a priority. They noted that it’s more than a social good; equity is also a scientific and market imperative.

Three Ways Patient Organizations Can Amplify Impact

Our discussion affirmed that patient organizations have opportunities to accelerate the progress of innovation through involvement in clinical trials, patient registries, data initiatives, and broader awareness building and engagement with patients. In reflecting on panelists’ experiences, priorities, and advice, three key areas of opportunity emerged.

1. Listen closely to stakeholders to identify barriers and gaps.

Patient organizations have a unique role at the intersection of patients, physicians, scientists, and industry. Panelists emphasized the importance of listening to stakeholders’ voices to gain deeper insights into what they understand and what they need. Doing so may surface the need for patient education about taking part in clinical trials and/or patient support to help in navigating complex diagnostic and treatment journeys.

One leader encouraged patient organizations to seek out obstacles and “white spaces”—areas where there are clear needs that can be addressed. These may include the need for targeted education, online resources for connecting with trials and providers, and accessible patient services, such as complimentary genetic testing for at-risk individuals. Similarly, more robust patient support services were mentioned as an area to explore—even though they fall outside the traditional remit of foundations focused on medical research.

2. Evaluate the need for a registry to support scientific and clinical progress.

For many cancers, some of the largest “white spaces” can be filled by a registry. In the past, registries have been maintained in silos, often by academic medical centers. Patient organizations are well positioned to step up and spearhead consolidated patient registries that can help engage a broader population of patients and gather the evidence needed to support new endpoints.

Panelists noted that establishing and maintaining a registry is a significant—but worthwhile—undertaking. They discussed the need to do the “homework” around validating the need for a new registry and investing in a governance and registry sustainability model that reflects input from and offers value to all stakeholders. When well designed and managed, a registry can become a powerful connector—offering everyone richer insights into patients’ molecular data, clinical-trial fit, and long-term outcomes.

3. Balance long-term aspiration and near-term pragmatism.

Oncology patient organizations must balance a long-term aspirational vision with a practical roadmap for incremental progress and organizational resources. Panelists talked about the tension between setting highly attainable goals, which may offer limited value, versus pursuing more ambitious targets that may prove difficult to implement. Determining what data to gather in a registry and collecting data from outside the U.S. were cited as examples. For those and similar challenges, panelists suggested that having a long-term plan—and a clear framework—helps to align near-term realities and long-term aspirations.

For more insights of value to patient organizations, read the Institute’s report on Global Oncology Trends 2024.