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Dr. Elena Netchiporouk obtained her medical degree from the Université de Montréal in 2012 and her Royal College of Physicians and Surgeons of Canada certified training in dermatology from McGill University in 2017. During her dermatology residency, she also completed a 3-year Master’s program in ….
First Edition | February 2022
Featured profile: Community Contributor
Rachael Manion is the Executive Director of the Canadian Skin Patient Alliance (CSPA) and the Canadian Association of Psoriasis Patients (CAPP). She is also Chair of the Patient Advisory Council of the Skin Investigation Network of Canada (SkIN Canada) and a member of the Executive Committee. Drawing on her background as a lawyer and consultant, Rachael brings a strategic and creative approach to advocating for better patient care.
What inspired you to choose patient advocacy as a profession or as a volunteer?
Like many patient advocates, I have spent my whole life engaging with the health system. It is an honor and a privilege to spend each day representing patients. As a lawyer by background, I have advised Health Canada on the regulation of health technologies, novel therapies and science policy. I then moved into consulting in public affairs and health policy advocacy before joining CSPA and CAPP.
Supporting patients has always been important to me. Throughout my career, I have participated in patient-focused organizations as a board member and volunteer, including the Canadian Congenital Heart Alliance, Centertown Community Health Centre, and ARA Mental Health Association in Vancouver’s Downtown East side.
What are the challenges in accomplishing your goals?
Skin patients in particular face many challenges and gaps in health services and access to treatments. Skin disorders are often diminished, disregarded, and dismissed. They are more than “just a rash.” Skin disorders often reflect imbalances in inflammatory and other systems, and can be caused or impacted by allergens, viruses, cancer, bacteria, fungi, genetics, wounds, hormones, and other disorders, and can cause devastating impacts.
I would not be surprised if everyone is a “skin patient” at some point in their lives, given the large number of different disorders that affect the skin, hair and nails. However, not everyone understands the science of skin and often manage these conditions based on (un-vetted) information on the internet. Misinformation can delay diagnosis and optimal care and treatment and cause a lot of frustration. Long wait times to seek specialty care from a dermatologist compounds frustration with the health system for many skin patients. Some skin patients face multiple challenges and managing their conditions can be complex. It is not yet common for complex skin patients to be managed as such. Many patients routinely struggle with accurate and timely diagnosis, navigate appointments with different specialists, and face elaborate treatment regimens. Although we are seeing many promising therapies coming forward in the future for skin disorders, many patients rely on older therapies that have become part of the skin treatment “toolbox,” yet they are not tailored to their specific disorder(s).
I am fortunate to work with excellent teams of patients, professionals and volunteers to help address these gaps at CSPA and at CAPP. The CSPA represents people impacted by over 3,000 skin, hair and nail disorders and works with our Affiliate Member organizations in Canada that are focused on specific skin patient communities, such as eczema, skin cancers, and psoriasis.
At CAPP, our team is dedicated to improving the lives of people in Canada impacted by psoriasis and psoriatic arthritis. Both teams raise awareness, provide education and support, advocate, and support research to create a better future for skin patient communities.
What are your hopes for the future of skin research with more patients included on research teams?
I have seen the lived experiences that patients bring to research teams as Patient Research Partners literally change the shape of research. Research resources – financial and personal – are scarce and we want to make sure that we are putting them where they will play an important role in saving or improving people’s lives. Working with patients helps us do that.
I have many hopes for the work of SkIN Canada and for the meaningful inclusion of patients on research teams. I hope we better understand the more than 1,000 rare skin diseases people live with. I hope we get faster and more accurate at diagnosing skin disorders. I hope that we have better tools to provide comprehensive care to skin patients in Canada. I hope that we get better at measuring what outcomes are important to patients. I hope we develop tailored treatments for all skin patients. I hope that we better understand the challenges that face patients in the workplace, their family lives and their social lives. And I hope we really begin to wrap our heads – and our arms – around the mental health impacts of stigma and discrimination that many skin patients face.
What are the roles and contributions of Patient Research Partners (PRPs) to SkIN Canada and skin research?
The patients who generously volunteer their time and energy to share their experiences and perspectives with SkIN Canada and skin researchers contribute so much! Patient Research Partners have lived with lengthy waits for diagnosis, stigma, mental health impacts, rare diseases, cancers, and navigated health systems across Canada in order to survive and thrive. They also bring their professional background as communicators, educators, advocates, and students to their role.
Patient Research Partners are essential contributors to every committee and working group that comprises the SkIN Canada. By being an equal participant in the discussions and work that shapes the network, they will help to ensure that patients’ perspectives are embedded in the work that the network does and supports.
Catalyzing Multicentre Skin Research
SkIN Canada is developing a consortium of research sites that will collectively drive the formation of new multicentre research projects. Research sites in the federation will have access to a suite of resources that will make it significantly easier to implement skin research.
Training and Education Initiatives
Inspiring the future of skin research with talent development & education. The COVID-19 pandemic has reinvented the way we exchange knowledge, offering unique and equitable opportunities to connect virtually and educate skin researchers and patients across Canada. LEARN MORE
Canadian Network of Skin Trials (C-NeST) – Pilot Projects
To help establish a framework for coordinating multi-centre skin studies involving community and academic research sites, the clinical trials arm of SkIN Canada initiated two pilot non-interventional research projects.
The CAPP – CIHR-IMHA Studentships in Psoriatic Disease provide undergraduate and health professional students with opportunities to undertake research projects related to psoriatic diseases with established investigators in an environment that provides strong mentorship. We encourage applications from across Canada by April 11, 2022. The Canadian Association of Psoriasis Patients (CAPP) was formed in 2012 to serve people impacted by psoriasis and psoriatic arthritis. CAPP’s mission is to be a resource to these people by improving their quality of life, raising awareness, providing education, advocating for better access to care and treatments, and supporting research.
The Institute of Musculoskeletal Health and Arthritis (IMHA) funds health research in order to develop and support a well-trained base of investigators with the skills and expertise needed to design and conduct innovative and diverse research and knowledge translation activities aimed at improving health.
If you are a healthcare provider, we would like to hear your perspectives on medication use during infant feeding.
Patient research partners have recently written about tokenism in research partnerships with patients
– and most importantly, what can be done to address it. Learn more about how to meaningfully include patients and patient organizations as research partners.
The program will provide $20,000 of support to as many as eight trainees or students to conduct one year of mentored research in the field of pediatric dermatology. Applications are due March 31, 2022 for fellowships beginning on July 1, 2022. For additional information, including eligibility criteria and instructions on how to apply, please see the Research Fellowship RFA.