Patients as Partners in Research
Cancer research requires cooperation and collaboration at all levels between a range of stakeholders to achieve success. At the heart of this though are the patients themselves. There is one element that connects all stakeholders in the cancer research process- Patients. Patients are the beginning of every story behind the breakthroughs in our understanding of this disease, the new treatments and improvements to health outcomes that come as a result.
However, there remain many problems with the way we care for patients. The latest treatment options, including those only available through clinical trials, are either not available or not accessible to many. Gaps in our knowledge about the disease mean that in many instances patients are either over treated or undertreated, or in many tumour types there is no meaningful treatment at all. However, we will never find the answers if we don't ask the right questions.
To give us the best chance of providing timely access to new treatments and health services, we need to listen to patients and their families, and learn from them the issues they are facing and their priorities.
After all, this is the community we aim to benefit.
The Future: Patient Engagement in Research
The healthcare system has dramatically changed in the past two decades, and patient and public involvement in research is not only happening widely across the world, but we are starting to see patients partner with researchers to design studies from the ground up, so-called ‘co-design’. Not only do patients and the public have a right to be involved in decisions that impact upon them, but involving patients in research has been shown to lead to better research and better outcomes such as enhanced research design, delivery, and dissemination—and the longer term and broader impact of an enriched research culture and agenda.
Here at ICGC ARGO we are committed to involving and engaging patients and carers in our work. To progress this we have formed a Patient and Public Involvement and Engagement Working Group (PPIE for short) which has identified priorities and significant issues surrounding cancer genomics research and treatment. The PPIE WG has been formed to focus on engaging with patients, health professionals and the greater public so as to increase the visibility and accessibility of ICGC-ARGO research. We aim to foster an environment in which researchers, health care providers and policy-makers understand the value of patient involvement, and patients see the value of these interactions.
This working group is not just ABOUT patients but also working FOR patients. If you have lived experience with Cancer or are passionate about precision medicine in cancer then please contact us to see how you can get involved.