The second BioCanRx-Cancer Stakeholder Alliance Learning Institute took place at this year’s Summit for Cancer Immunotherapy. This initiative brought together patient/caregiver leaders (patient scholars) and Highly Qualified Personnel (academic scholars) from the BioCanRx network in an interactive and collaborative knowledge exchange program. We asked two of the participants, a patient scholar and an academic scholar, to tell us about their experience.
Participation from a Patient/Caregiver Perspective
PUTTING A FACE TO CANCER RESEARCH
By: Roberta Casabon, Caregiver Advocate for Prostate Cancer Canada, member of the Patient Involvement in Cancer Research Program
November 2017 marked the first gathering for members of the Patient Involvement in Cancer Research Program (PIP), initiated by the Canadian Cancer Research Alliance. The inaugural flyer described PIP in the following manner: ‘The goal of the program is to strengthen the capacity of patients to act as advisors to cancer research projects, researchers, and research funders or as advocates for patient involvement in research, specific types of research, research funding, and implementation of research evidence within the cancer care system.’ PIP was a perfect match for continuation of this goal with the BioCanRx-Cancer Stakeholder Alliance Summit4CI Learning Institute and consequently these individuals were invited to participate as patient scholars in the Learning Institute at the 2018 Summit4CI.
BioCanRx established a buddy system that paired a cancer patient, cancer survivor or caregiver with a young researcher for the duration of the Summit. All members of the Learning Institute were provided with a workbook that offered a format in which to record any thoughts and/or points of interest gleaned from each of the presentations given during each of the Plenary Sessions. The workbook also included a glossary which could be used to aid in the understanding of acronyms and terminologies. This proved to be a very helpful tool and the patient scholars offered suggestions for additions to future documents.
Each day, during the breakfast and lunch breaks, the group came together for debriefing and analysis of their findings. These sessions provided the opportunity to connect with the assigned ‘Buddy’ as well as other Learning Institute participants. The goal was to facilitate a greater understanding of the body of work presented through open dialogue.
While the day-to-day logistics of being a participant in the BioCanRx Summit4CI Learning Institute filled our day and minds over the course of the event, the key take-away is that we were there and actively participated! Many of the patient scholars represent cancer patients and/or survivors. As an advocate for Caregivers, I represent the other face of those dealing with a cancer diagnosis. The patient scholars brought the real face of cancer and its impact on families to the Summit4CI. We are the faces that sit in Cancer Clinics hoping for the promise of a breakthrough that will come from the research presented during the Summit. We are the faces of those who actively seek clinical trials in the hope that we or our loved one will live to see another sunset, another anniversary or the birth of child or grandchild. We are the reason for and the recipients of research.
When I speak about my husband’s and my dance with cancer, I often quote ‘Invictus’. To me it speaks of the inner strength that everyone who faces cancer finds during one of the most challenging times in their lives. As Captain of their ship, cancer patients summon the courage and resolve to fight for their right to be part of a clinical trial and to take on the travel that is often required in order to participate. As masters of their soul, cancer patients willingly share their story in the hope that researchers will connect with the potential recipient of their work. In doing so, their hope is to soften the road so that others may have easier access to clinical trials and benefit from current research.
The pairing of researchers and patient scholars during the BioCanRx Summit4CI strengthens the collaborative bond between these profoundly dependent groups. The patient scholars applaud the dedication of the keynote speakers and researchers who presented during the plenary and poster sessions. We applaud your persistence in working to find cures that will change the lives of cancer patients everywhere. We simply ask that you remember the faces of those you hope to help as you make your way toward finding a cure.
Participation from a BioCanRx HQP Perspective:
PATIENT-RESEARCHER ENGAGEMENTS
By: SeongJun (James) Han, MSc, PhD candidate. BioCanRx Highly Qualified Personnel, Princess Margaret Cancer Center, University Health Network
Just like my colleagues pursuing PhD in biomedical sciences, I started my graduate studies hoping to advance science that can one day benefit the medical community and patients. The idea of utilizing our immune system to target cancer was not only appealing from a therapeutic perspective, but also scientifically exhilarating. However, during the intense journey of research, many trainees may lose sight of why we began this journey and what we hoped to accomplish. I was fortunate to have an amazing scientific mentor who helped me overcome these barriers. However, many of us forget that bench-to-beside research is a collaborative process which is for the betterment of our community. The Learning Institute (LI) at the Summit4CI, which brings together academic scholars comprised of HQP trainees and patient scholars, reminds us that there’s more to research than conducting bench experiments. Simply put, it was a remarkable opportunity for trainees to engage with the patient advocates who not only showed us the importance of patient-researcher collaboration but also re-ignited the “human” element of our research.
Both the patient scholars and academic scholars were gathered at the Summit4CI in Banff with a common goal to accelerate “bench-to-bedside” research. Through programs such as the Learning Institute, young researchers and early investigators are able to comprehend the collaborative process involved in translational research and the bigger picture of research outside of the lab. Our specific roles as academic scholars in the Learning Institute involved translating technical research presented during the conference in hopes to not only educate the patient scholars but also prepare a document outlining the recent advances in cancer immunotherapy for patients. From the discussions involving mechanisms of CAR-T cell therapy to importance of neo-antigen discovery, our goal was to make sure the patient scholars clearly understood the innovative research in immune-oncology. Proper translation of knowledge is particularly important in the field of immune-oncology where the accelerated momentum in the research area has given rise to many different pre-clinical studies which show promising results. However, not all ideas may be feasible from scientific, logistical or financial angles, and it becomes critical for us researchers to communicate science without making an overstatement nor understatement.
Perhaps the most fascinating part of LI was having in depth discussion with patient advocates including my “patient scholar buddy,” who shared their insights in translational research and clinical trials. Research trainees (as well as senior researchers) often lack exposure to the direct consumers of the biomedical research and have different priorities. Many of us researchers prioritize scientific rigor and publications over immediate clinical translation, which is quite different than the priorities of patient and medical communities. Although the goal of curing cancer one day can be considered a universal goal for all of us, the LI reminds us that we all have slightly different priorities in achieving the same goal, and that collaboration is the key to optimally reaching the end goal. In summary, while my experience may not fully recapitulate other academic scholars who attended the LI, it personally provided me with various learning opportunities and inspirations.
