Antonia Palmer, Chair of OICR’s Patient and Family Advisory Council, shares her thoughts from the Conference
OICR recently established a Patient and Family Advisory Council (PFAC). The PFAC will be the chief patient-focused advisory body for the Institute and will have a critical role in helping it become a patient-partnered organization. PFAC members are an engaged and impressive group of patients and patient representatives from across Ontario. I have the great honour of taking the role of the first Chair of the PFAC and look forward to what our group will be able to accomplish as the group becomes established within OICR.
The first day of the OICR Translational Research Conference has been extremely interesting and illuminating. We applaud the future vision for OICR that Dr. Laszlo Radvanyi, the Institute’s President and Scientific Director, described in his opening remarks – placing an important focus on the early detection of cancer and on the development of precision tailored treatments leading to the cure of different cancer types and improved monitoring.
We are seeing research that is extending across different cancer types. Research into early detection that is simultaneously effective, minimally invasive, and cost effective. The creative design of clinical trials such as the Window of Opportunity (WOO) clinical trials, also known as phase 0 clinical trials, that evaluate new treatment strategies in between the time of a patient’s cancer diagnosis and their surgery. During the sessions we were informed about research into molecular signalling and how disruptions into signalling pathways contribute to disease, how radiopharmaceuticals are used for targeted therapies and imaging – working to improve the dynamic monitoring of disease and for early detection and diagnosis, and research into methods of cell protection and how to override checkpoints to disrupt inhibition. In the keynote address from Dr. Sylvia Plevritis, we learned more about the tumour microenvironment interactome.
When patient partners involved in the Conference had a debrief earlier today, we talked about the significant importance of collaboration between researchers, research institutions, within Ontario, other provinces and across Canada. Sharing findings and information in conferences like this one is absolutely critical but we must develop more regular, accepted and seamless ways of sharing research and patient information within provinces and across the country. Data sharing is critical for moving the science forward and an example of this was specifically highlighted in the talk earlier today on hereditary cancers and being able to share information about patients in one family who live in different locations. We must continue to work to address communication and data sharing silos to create more opportunities for data sharing. The pandemic has also been a spotlight for this important issue.
Patient partners involved in the Conference greatly appreciate the lay summaries for presentations, the ability to ask questions, and to be a part of better understanding the immense breadth of work that is being done in the world of cancer and how OICR is a part of making a difference in oncology.
To all the researchers providing formal presentations, presenting posters, asking questions, and immersing themselves in science – patient partners see you, your work, passion and dedication. We are pleased to be able to learn from you and hope that we can create more pathways where you can learn from us. Your work gives us hope, and for that, we thank you.
The involvement of patient partners in research provides for some rich interactions and learnings that can occur in the design, execution and communication of findings. Patient partners are different from research participants – they are people with lived experience who can bring patient focused learnings and experience as involved members of research teams. For researchers who are a part of this Conference, how are you including patient partners in the research that you are doing? If you were to include patient partners in your research, how would you do that? If this is something that you are doing already or something that you would like to start to do, I would like to encourage you to reach out to OICR to share your experiences or begin a discussion about how the OICR PFAC can help to bring the patient partner voice to your work.
Thank you for this opportunity to be able to share some patient reflections from Day 1 of the Conference. You can also read patient reflections from Day 2 below.
Day 2 opened with Dr. David O’Neill, President of FACIT, described the need for establishing Ontario in a position of strength in the area of oncology research and the importance of initiatives such as Ontario First commercialization. As patient partners, we absolutely agree that we need to work diligently to ensure that patients are getting early access to experimental diagnostics, imaging and treatments. Building pathways for translating health intellectual property will create a positive feedback loop – encouraging even more research and research commercialization here in Ontario to continuously grow the promising pipeline of high-quality oncology innovations. It is about a positive impact on research, health systems, and the economy.
In our Patient Partner debrief today, we talked about the breadth and quality of research presented today, and at the Conference overall. We can hear the excitement and enthusiasm as presenters talk about their research and the science. This enthusiasm is palpable and in turn excites patients.
We see great examples of collaboration that is happening provincially, nationally and internationally. Collaboration is paramount and we applaud the sharing of research and the creation of multi-disciplinary teams to push science forward and provide the right treatments to the right patients at the right time.
Patient partners are excited by what we learned today about research on:
- The use of novel imaging technologies to investigate cancer from the single cell level to understand different disease sub-groups and possible response to treatment.
- The production of radiolabelled molecules for imaging and therapy – pushing forward understanding of patient stratification, disease response monitoring, drug development and imaging as predictive biomarkers of disease response.
- The better understanding of diseases like pancreatic cancer through clinical trials to improve outcomes for patients.
Exciting developments were also shared about international data sharing, ICGC-ARGO and platforms for Big Data. And also the longitudinal understanding of cancer through CanPath to support studies focused on early detection.
We also heard about the importance of including health technology assessment early in the research process, especially within the precision medicine landscape, and how we can create a learning healthcare system to generate and apply real world evidence.
During the open session on patient partnership, the discussion was wide ranging. We talked about the importance of integrating patient partners in research. Cancer forces patients to walk a tightrope and helping researchers understand that bigger picture is critical. Patient partners provide a human face to research.
We also talked about the importance of equity, diversity and inclusion in research and patient partnership and the importance of ensuring that treatments, clinical trials, and research are representative of all Canadian communities.
We discussed how we communicate to patients about science, clinical trials, and research findings. There is an obvious importance of talking about the successes of research; however, it is important to discuss the failures that also occur. The scientific process is not only about the successes. It is critical that we do a better job of helping each other understand where research fails and how we use that knowledge to understand where to go next.
Ideal patient partnership engagement has many forms. It is about ensuring that patients are involved early in the project, that their role is defined and understood, the involvement is built on trust and respect, and that there is a platform for open two-way conversation. If you are unsure with how to integrate patient partners within your research, the most important thing that you can do is try. If you need help with integrating patient partners into your research, please reach out to OICR and the Patient and Family Advisory Council will be happy to help.
Thank you for this opportunity to be able to share some patient reflections from Day 2 of the Conference.