Career Panel: Improving the quality of care through patient engagement
Written by Brittany Umer
Patient engagement and patient-centricity is a hot topic in healthcare and drug development. Pharmaceutical companies and government organizations are adopting patient-centric ideals and looking to engage with patients throughout the entirety of the healthcare continuum, spanning drug development to clinical trials to marketing and access. The FDA, for instance, is currently developing a set of guidance documents for the incorporation of the patient’s voice in drug development and decision making for patient focused drug development (PFDD). In Canada, patient engagement is a critical component of the reimbursement process, where patient input is a primary element of health-technology assessments and plays a key role in providing patient access to new drugs. While governments and pharmaceutical companies are recognizing the importance of engaging patients, they are playing catch up to patient organizations who have been advocating for patient engagement for years. On February 17th the S2BN gathered premier powerhouses in the patient-engagement space in Canada to chat about their career paths, patient engagement, and improving the quality of care for Canadians. We had the pleasure of hosting:
Eva Villalba- Executive Director of the Quebec Cancer Coalition/ Coalition Priorite Cancer au Quebec
Louise Binder- Health Policy Consultant at Save Your Skin Foundation
Kathy Brodeur-Robb- Executive Director at C17, Pediatric Cancer Clinical Trials
Martine Elias- Executive Director at Myeloma Canada
Our panel was moderated by Nadia Daniel, PhD Candidate at the University of Alberta and Vice president of the Edmonton S2BN Chapter.
Career paths leading to patient engagement
It is important to recognize that career paths leading into patient engagement are diverse, non-linear and can sometimes come about unexpectedly!
Eva Villalba got her start in patient advocacy after studying psycholinguistics at McGill. While she was working as a development director for the Palliative Homecare Society of Greater Montreal, she realized that individual community organizations can really make a difference and impact the lives of patients. After realizing how rewarding it was to work with patients and caregivers, she was hooked! So much so that she continued her education by completing an MBA intentionally seeking to apply her business education to the non-profit sector. Now, as the Executive Director of the Quebec Cancer Coalition, she leads a coalition of 65 organizations spanning all types of cancer across the continuum of care from prevention to diagnostics to survivorship. The overarching objective of her role is to improve the quality of care for cancer patients in Quebec. In continuing that objective, she is currently completing her Master of Health transformation in value-based healthcare.
Louise’s path in patient engagement started by chance as a patient following her HIV diagnosis (as Louise astutely notes: most patients are patients by chance). As an HIV positive individual, she became engaged in her own treatment. She learned about the disease and the research that was being undertaken, and then advocated for access to experimental treatment. She recognized that access to social determinants of health were a critical factor in her own survival, but realized she needed to become engaged at a systemic level to provide access to all patients that may not have been privy to the same opportunities. Her parents were fierce social advocates, and so Louise likes to say that advocacy was built into her DNA, HIV into her RNA. As a lawyer, Louise has continued her work in patient engagement ever since. As a Health Policy Consultant with the Save your Skin Foundation, Louise continues to fight for patient access to oncology treatment.
Kathy studied anthropology before segueing into medical research. This paved the way to clinical trial work, where she became involved in a phase II clinical trial and suddenly was faced with preparing for a possible FDA inspection. She had to learn on the fly but hasn’t looked back since and has continued her career in clinical trials. She is now the Executive Director of the C17 Oncology council, which represents the interests of pediatric oncology patients across Canada. At the C17 Council she leads a team of research associates (including PhD trained scientists) that have submitted over 250 clinical trial applications for Health Canada in children’s oncology and blood disorders. Kathy emphasized that along a career path there are always different pathways we can take, and she has let her values help lead the way.
Martine had recently completed her MSc in marine biology when she was faced with a career-defining decision: To either pursue a PhD and continue studying marine biology, or transition into clinical research at Janssen Pharmaceuticals. As her mom used to say, “if you don’t get on the train, you won’t go anywhere”. She decided to take the clinical research train, eventually transitioning to market access. Like Louise, Martine realized the devasting impact lack of access to treatment was having on HIV-positive individuals in Canada. As a market access professional, she realized the impact she had in getting patients access to drugs but recognized a disconnect between clinical trial processes and access concerns. After realizing patients were not engaged in clinical trial processes, she recognized how much work needed to be done to engage with patients and decided to lead the charge in a Community Engagement role. Nowadays, Martine is the Executive director of Myeloma Canada, where (among many other things) she helps coordinate drug reimbursement for new treatments by bringing patient perspectives to the forefront.
Opportunities for students in patient engagement
Martine Elias suggested that patient organizations always need help. There are simply not enough hands to do all the work that needs to be done. This help can include anything from research in policy, environment scans, etc. She recommended that if anyone is interested and wants to be involved in patient issues, reach out (noting that there is a little bit of money to go around, and so this isn’t always totally volunteer). Pick up the phone and call, email or text. They are always willing to receive help.
Kathy also pointed out other opportunities for student involvement in patient engagement initiatives. She notes that this will also open you up to different ways of viewing your research while keeping patients in mind. Kathy and Louise both helped develop the “Learning Institute” with BioCanRx, modelled after the Learning Institute developed by CATIE in the HIV community. The Learning Institute helps engage patients and promote knowledge exchange in immunotherapy research in Canada. They are accepting applicants for the next round of the Learning Institute which can be accessed at: www.cancersummit.ca/program/the-learning-institute.
Words of Wisdom on a career non-profit and patient-engagement
Eva: “You have to LOVE doing 500 different things. If you like singular tasks, non-profit may not be for you. Also, you have to be humble and willing to do any task. In non-profit, you do it all. Versatility is key to success”. On patient engagement, “You cannot do anything for patients without directly involving them. You have to amplify their voice and encourage their participation and move towards a ‘patients as partners’ approach”.
Louise: “You should engage patients because you make your work more successful and you will be happier with your process… Knowing that you can change people’s lives is so rewarding.”
Louise cautions, however, that if you are someone who needs instant gratification, don’t go into this line of work! Patient engagement is not a sprint but a marathon!
Kathy: “We need to have success in research, and success comes from a diversity of thought information and support”. When asked about what a typical day looks like in her role, Kathy said that every day “it’s the tyranny of the urgent- you never know what it’s going to be that day and what you will have to deal with…don’t let perfection be the enemy of the good! Sometimes you need to be nimble and aggressive when needed”.
Martine: “When you put (all the stakeholders) in a room together you do more problem solving. Lots of complex problems are solved by personal relationships. Trust that the people on the other side of the table want to get to a solution like you”.
Concluding remarks
While all our panelists entered the patient-engagement realm through different paths, the common thread appeared to be following your values. Our panelists all recognized how valuable it is to work with patients to make sure their interests, opinions and insights are used to guide both the drug development and decision-making process. All of our panelists emphasized how rewarding their roles are. As Martine said, “You can never predict where you are going to end up, so follow your passion and get on the train. It will get you somewhere where you are going to be happy. And if you are not, you can always get on another train!”.
Watch the video link below to tune in to the full event, which includes discussions on:
A day in the life of our panelists’
A real-life moment of networking-in-action while our panelists connected each other with information that was relevant in their work
Impact of COVID-19 on patients and patient engagement
Impact of PMPRB reforms on patients
Bonus: Louise’s recommended book club reading in systems’ thinking: The grey rhino
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