World Cafe Report: Advancing Precision Oncology in the Real-World Environment (AsPIRE)
Introduction
Precision oncology is a new way to treat people with cancer that can transform lives, but its potential benefits have not yet been fully realized. The precision oncology landscape is rapidly changing and fragmented. Efforts to expand it are piecemeal and disconnected. Patients are often unaware that better treatments may exist, and cannot discuss these options with healthcare professionals. Even where treatments are available, barriers to access may prevent that treatment from being offered to patients. As a result, patients do not benefit from the optimal treatment, with a health, societal and economic impact. To address these challenges, our research team organized a World Café to involve stakeholders in identifying the research priorities aimed at improving access to precision oncology.
Methods
The World Café was a half-day event involving three 45-minute roundtable discussions on the following topics: (1) Aligning our research questions about advancing precision oncology with stakeholder priorities, (2) Aligning our research outcomes about advancing precision oncology with stakeholder priorities, and (3) Maintaining involvement with stakeholders during and after the research. Each topic included a set of four to five questions designed to guide the roundtable discussion. Each table had one facilitator, one note-taker, and four to five stakeholders. Stakeholders included individuals with lived experience, scientists, and healthcare professionals. The research team used purposive sampling to recruit stakeholders from diverse backgrounds to participate in the World Cafe. During the event, data was collected by note-takers in collaboration with facilitators. Data were analyzed using Dedoose, a qualitative data analysis software. Thematic coding was conducted by a member of the research team using a codebook developed from the list of questions specific to each topic.
Results
Twenty-five people participated in the World Cafe, including 17 stakeholders, four facilitators, and four note-takers. Stakeholders included 12 individuals with lived cancer experience, two scientists, two healthcare professionals, and one healthcare system decision-maker. Among the 11 people with lived cancer experience, 10 had been diagnosed with cancer and one was a family member or caregiver of a person previously diagnosed with cancer.
Stakeholders identified several priority areas for research questions. The top priorities were focused on the following areas: better communication between healthcare professionals and patients about precision oncology, more patient education resources about precision oncology and research opportunities, easier access to precision oncology, consistent and transparent standards for precision oncology, support for navigating precision oncology throughout the cancer care continuum and minimizing the financial impact of precision oncology on patients and the healthcare system.
Important outcomes from this research included those impacting both patients and the healthcare system. Stakeholders highlighted the importance of evaluating the side effects of targeted therapies used in precision oncology compared to traditional cancer treatments, like chemotherapy. While targeted treatments may not always offer a cure, they can prolong patients' lives, providing time for new therapies to be developed. Providing hope and tracking the number of targeted therapies per person emerged as an important metric for success in precision oncology. From a healthcare system perspective, stakeholders felt an important outcome of this research was to demonstrate which patients have access to precision oncology. Access to precision oncology included research opportunities, such as clinical trials and biobanking. Stakeholders also felt that reducing the financial impact of precision oncology on patients and the healthcare system was an important outcome of this research.
Stakeholders made several recommendations for the successful involvement of people with lived experience throughout the entire research process. Their recommendations included collaborating with advocacy groups to align research priorities and recruit diverse perspectives. They recommended building capacity for both researchers and people with lived experience to ensure everyone was equipped to engage effectively in research together. Finally, they recommended incorporating participatory methods in the research process to allow people with lived experience to effectively share their expertise.
Conclusion
The discussions at the World Café provided insights into real-world experiences related to precision oncology and identified issues important to stakeholders. By involving stakeholders in a World Cafe, we will be better able align our research with the needs and priorities of those directly affected by cancer and its treatments. These priorities will be followed up with communities, researchers, and healthcare professionals to co-develop research plans and improvement strategies.