Alicia Tone

Putting Patients First: Pragmatic Trials in Gynecologic Oncology

In November 2024, the Society of Gynecologic Oncology of Canada hosted a 2-day, interdisciplinary Pragmatic Clinical Trials (PCTs) Workshop with the goal of launching an initiative to develop and promote PCTs within the Canadian gynecologic oncology research environment. The programme brought together multiple stakeholders, including patients with ovarian cancer, patient advocates, experts in PCTs, gynecologic oncologists, medical oncologists and clinical fellows. Foundational elements of pragmatism were emphasized in the context of the primary goal of PCTs, showing the real-world effectiveness of interventions in broad patient groups. Examples of how PCT outcomes can inform and influence clinical decision making and health policy were presented in the context of those outcomes that matter most to patients with cancer. The patients and patient advocates had the essential role of helping clinical investigators co-design PCT protocols to answer common, important, and practical questions that focus on outcomes that matter to patients. These endpoints included overall survival, quality of life and promotion of informed patient decision making. Tangible workshop outcomes included the development of several new proposals for PCTs inspirited and directed by the patient voice. Further educational initiatives to engage clinical gynecologic oncology investigators at all stages in their career are being planned.

Advancing Research Alongside Patient Partners: Next-Generation Best Practices for Effective Collaboration in Health Research

Ovarian Cancer Canada’s Patient Partners in Research (PPiR) is a national volunteer-based program that trains and connects individuals with lived ovarian cancer (OC) experience to diverse research opportunities, to maximize the clinical relevance and real-life impact of OC research in Canada. A steadily increasing demand for patient partners to be involved as research team members and decision-makers led us to co-develop with the PPiR team a series of “best practices” for researcher–patient partnerships. This framework formalizes our evolving approach to patient engagement and begins to address challenges that can arise in research settings focused on less commonly diagnosed yet significant and fatal diseases such as OC: (1) Start early. (2) Foster collaboration among the entire research team. (3) Establish expectations and communicate regularly. (4) Report impact of patient partner contributions. (5) Ensure adequate resources. While there are ongoing challenges associated with patient engagement that need to be addressed, data collected from an anonymous survey of Canadian OC researchers show a marked improvement in perceived benefits of patient engagement over time and validate the best practices presented herein. Developed in the context of OC research, these best practices can be adapted to a variety of health research settings with similar challenges.