Patient engagement in the research development process has historically been limited in the ECOG-ACRIN Medical Foundation, particularly during the early phases of translating a research idea into a research concept. The project team interviewed patient stakeholders to identify barriers to engagement throughout the research concept and protocol development process. Respondents noted that too few patients and patient advocates routinely participate in existing ECOG-ACRIN stakeholder activities, and there is presently limited capacity to expand participation; patients and patient advocates are perceived to lack sufficient training in comparative effectiveness research (CER) methodology to contribute as co-investigators; and patient engagement is perceived to be required only after the research question has been developed, the intervention and comparator chosen, and the outcomes selected. From this preliminary evaluation, the project team identified a need to create a framework by which patient stakeholders can contribute to all phases of the CER development process.
During a preliminary phase of this research, the project team engaged patient advocates from the ECOG-ACRIN network to review and rank the American College of Radiology’s research priorities. These advocates have expertise in cancer and/or radiology. This enabled us to identify the categories of research that are most critical to our patient stakeholders, such as access to screening, incidental findings reporting and subsequent testing/treatment, use of imaging tests to determine subsequent testing/treatment, standardized radiology reporting, and patient portals to improve patient outcomes. These priorities will be areas of focus at the proposed workshop, where candidate research concepts aligned with one of the above categories will be further developed by patients, advocates, and other stakeholders. The workshop will involve a broader group of patient stakeholders than the priority-setting session, and will develop best practices for integrating the patient experience in clinical trial design, implementation, and results dissemination.