– Louise, how did you get involved with the Save Your Skin Foundation? What attracted you to the organization?
A: Save Your Skin Foundation was founded and is led by a cancer survivor , Kathleen Barnard, who, like myself, had originally been given no chance of survival due to her disease. She took control of her own research and decision making about how to learn about available clinical trials and other relevant information and has outlived her prognosis by over ten years. I have outlived mine by 27. I felt that she was a kindred spirit and her passion for helping others in need is bounded only by resources and time.
I wanted to bring my experience in health policy to the oncology community at the time when innovative treatments were becoming developed and available. The difficult parts are getting access to them for all, regardless of access to funds or geographic location, and to ensuring that health policies do not create barriers to this access. Kathy understood the relationship between access and health policy and has been a strong supporter of my work.
– Tell us about your role in the organization? How did your background and experience prepare you for the work you’re doing?
A: My primary role is to monitor and evaluate health policy at all levels of government and in the private sector and to facilitate patient group collaborations to provide the patient voice and perspective to these policies. This is done through a number of media including Position Papers, policy submissions, attendance at consultations, media pieces and public speaking. Only patients and their supporters can truly understand the practical implications of these policies. Something that may look good on paper may have unintended negative consequences for some or all patients and/or may be impractical to implement. Policymakers need to understand these. I have been fortunate to work with a dedicated and tireless group of patient representatives on these projects.
I have also been an advisor on multi-stakeholder committees and other group settings to share best practices, issues of mutual concern and to discuss potential solutions.
I dabble in research as well, learning everything I can that may be of help to my work from a patient perspective.
I do my best to be available to others working in patient representation roles in other organizations as a mentor, or just a sounding board for their ideas and concerns.
I am an English major and a lawyer by training, both of which have provided me with skills and experience that have been very useful in my advocacy work and my submission writing. My 18 years working at both a national and international level for the HIV/AIDS patient community taught me a lot about science and especially clinical trials, how health systems work, how to work with diverse populations including those that have limited access to the social determinants of health of housing, employment, education and training, social networks, and the rich cultural heritage and principles of our Indigenous communities. It also taught me that although we should always try to solve problems with decision makers collaboratively and logically, there are times when public support is needed.
– What inspires you most about working for the Save Your Skin Foundation? What are you most proud of?
I am inspired by the stories of patients and their families whom we have helped, individually or collectively, even when we do not always succeed. I am proudest of the messages I get from patients and their representatives thanking me for hearing them for caring and for helping.
– COVID-19 has brought many challenges to cancer patients and to the not-for-profit organizations supporting them. How has the pandemic affected your stakeholders and your organization? How have you had to adapt?
A : Since the COVID-19 pandemic began I have also been monitoring aspects of the pandemic impacting oncology patients and have been part of an amazing team of patients and patient group representatives who have worked to fill in gaps in services for patients and to influence public policy in a manner that recognizes the discrete needs of oncology patients.
The delays for all types of access to services from screening to diagnostics to treatments to surgeries and follow up care have been tragic. The physical and mental health implications for people already under such extreme stress have been gut wrenching to observe. Virtual care has brought some relief but certainly has not filled the role only in person appointments and treatments require.
A collaboration of patient groups has raised funds to build a website Hub for links to information about COVID and cancer, mental health services and have facilitated and paid for taxi rides for over 3000 patient trips to oncology-related medical appointments. This at a time when funds for our groups are even more limited than previously.
Many conferences and meetings that were previously held in person are now held virtually. While this has some advantages in terms of travel and efficiency, it does not take the place of the informal discussions and introductions that take place, often leading to creative ideas and projects.
A group of oncology organizations is now beginning to research the virtual care approach for oncology patients specifically and how to optimize its use across the care continuum.
The vaccine roll out for cancer patients across the country has been a matter that the oncology patient groups have been following closely as have their healthcare providers. Due to concerns that the present roll out dose scheduling interval plan will lead to poorer immunization outcomes for immuno-compromised people including numerous cancer patients, we have been engaged in a campaign to educate decision makers and the public about our concerns and to ensure appropriate changes in each province.
– BioCanRx is pleased you are chairing the Cancer Stakeholder Alliance Working Group – why was it important for you to take on this role?
A: I am honoured to be involved with BioCanRx and to Chair its CSA Working Group. This organization of researchers has recognized the value of collaboration with other stakeholders including patients and patient representatives, rarely seen. Facilitating this two-way exchange is very rewarding. I know that research is enhanced by real world experience that patients bring to their work. I also have heard from researchers who work with patients that this has enriched their research experience as well.
– Looking forward, what are you hopeful about for cancer organizations such as the Save Your Skin? (IE – patient engagement, expanded role in research, etc.)
I look forward to the day that patient organizations are recognized as equal partners in all aspects of the healthcare continuum from engagement in research, to membership on all government bodies that impact their lives to meaningful decision making in health policy at all levels of government and private industry. I look forward to the day when real world experience is respected as equally important as theoretical knowledge and educational qualifications.
– What else would you like to share about your organization?
I am so pleased that my organization has recognized the importance of including social determinants of health in all that it does. I am also honoured that we have been able to build trusted relationships with some absolutely awe-inspiring Indigenous colleagues that has added a richness and depth to our work.
– What do you like to do outside of work?
Before the pandemic I loved to travel for pleasure, see good films, go to the theatre and opera and have long laugh filled dinners with friends either at restaurants or on my patio.
Since the pandemic, I have taken to online scrabble and dinner with a friend who lives alone. I enjoy the patio because some beautiful cardinals live in a tree I can see and I listen to them sing. I also have long philosophical conversations with my constant companion, Miss Elaine, a ten year old tabby.