What We Do
Patient Partners play an active role in shaping research, policy, and initiatives at CanVECTOR.
Contributions
Study Teams
Patient partners contribute directly to research teams by bringing lived experience into the design, conduct, and interpretation of studies. We participate on project steering committees, such as in the CIHR-funded EPCAT III study. Our insights help shape research questions, study materials, participant communications, and the relevance of outcomes to those affected by VTE.
Review Committees
Patient partners serve as reviewers for CanVECTOR’s funding competitions, including Pilot Study grants and Fellowship awards. Our perspectives ensure that proposed projects reflect patient-identified needs, ethical considerations, and real-world impact. We review Lay Summaries written by trainees and offer helpful suggestions on how to communicate research in plain, understandable language.
Network Decision Making and Planning
Patient partners are active contributors to the governance of the network, including representation on the Scientific Steering Committee (SSC). In these roles, we provide strategic input, help guide decision making, and ensure that the patient voice is embedded in high-level planning and networkwide initiatives. Patient Partners also play an important role in planning the annual conference by serving on the Scientific Planning Committee and helping develop educational sessions or workshops related to patient engagement and partnership.
Research Priorities and Outcomes
Patient partners codeveloped the top research priorities for VTE in Canada through the James Lind Alliance Priority Setting Partnership. We played a key role in creating an international core outcome set for VTE clinical trials called VTE-COS. Our involvement ensures that research addresses meaningful, real-life concerns and that outcomes used in studies reflect what matters most to patients.
Advocacy
Patient partners advocate for increased awareness of patient-important issues and priorities, including mental health. We also contribute to efforts to promote equity, diversity, and inclusion in research and help inform efforts to reduce barriers to research participation.
Project Examples
Clot Top 10 was a priority setting partnership project, conducted in collaboration with the James Lind Alliance, to identify unanswered questions about the prevention, diagnosis, management and long term impact of clotting disorders and its treatment on patients and their families.
Patient partners played a key role as members of the steering committee of this project from survey of patients and caregivers on areas of uncertainty, consolidation of responses to candidate questions, and engagement at the consensus-building workshop (held in August 2022).
The key deliverable of this project was a set of Top 10 Research Priorities in venous thromboembolism in Canada. These Top 10 Research Priorities are:
VTE Core Outcome Set (VTE-COS) is an active project funded by the CIHR aimed at developing a standardized, minimum set of outcomes that should be consistently measured and reported in future clot-related studies. Patient partners are actively involved as steering committee members and have contributed to two review article summarizing outcomes reported in previous VTE studies, including patient-reported outcomes.
In phase three, an international survey was conducted to determine the importance placed on these outcomes by patients, caregivers, healthcare providers, policymakers, research funders, and the pharmaceutical industry. Our patient partners spearheaded the dissemination of this survey.
Key papers from this project (on which patient partners have contributed as co-authors) include:
In collaboration with researchers at Queen’s University, one of our patient partners co-developed an artificial intelligence-guided algorithm to help doctors, nurses and other clinicians diagnose blood clots in the lungs (known as pulmonary embolism) more safety and effectively.
Known as PE Nudge, this tool has the potential to fill a crucial knowledge gap in the emergency departments across Canada to help catch cases of blood clots where they may have otherwise been missed.
The AI ‘nudge’ taking aim at pulmonary embolism | Faculty of Health Sciences | Queen’s University
Patient partners were integral to CanVECTOR’s Mini-Symposium on Ethnoracial Diversity in VTE Research held on October 26, 2023 to form a roundtable discussion on ways in which blood clot-related research can be more inclusive of ethnic or racially under-represented populations.
The Mini-Symposium brought together participants spanning the breadth of VTE research enterprise in Canada, including patients, principal investigators, research coordinators, and racialized population health researchers.