Natalie Kermany is a Policy & Planning Analyst at the Natural Sciences and Engineering Research Council of Canada (NSERC) and is passionate about advocating for patients living with skin conditions. She is currently the Patient Research Partner (PRP) for the Training Committee of SkIN Canada, and has also served as a Grant Reviewer for the Canadian Skin Patient Alliance (CSPA). Natalie has a Master of Science Degree focused in Animal Behaviour from the University of Ottawa, and her interests include dermatology, intersectional environmentalism, equitable healthcare, and anti-racism work.

1.  What inspired you to become an advocate for patients with skin conditions? As a child, I was diagnosed with vitiligo – a skin condition that causes a loss of pigment in an individual’s skin, and appears as light patches that vary greatly in size and number. Through growing up with vitiligo, I learned first-hand about the stigma associated with skin conditions, and the lack of awareness surrounding them. Though I am grateful that my diagnosis did not affect my physical health, it had a large impact on my mental health. It was my personal experience living with this skin condition which inspired me to become an advocate for other patients, as I knew that I wanted to bring awareness to the mental health impacts that skin conditions can cause, and help improve other patients’ quality of life.

2. What are some of the challenges you had to face while trying to accomplish your goals? One of the main challenges that I have experienced is learning to be confident in my own skin (literally and figuratively). As a young woman, I often struggled with personal doubt and imposter syndrome. Over time, I have learned that everyone has their own unique experience that they bring to the table, and that each person can contribute a valuable perspective to a discussion. As a patient research partner, I try to remind myself of this while I interact with other members on the Training Committee, and am grateful for the chance to share my perspective with such a talented group.

3. What are your hopes for the future of skin research to include patients and patient research representatives on research teams? I feel optimistic about the future of research teams in terms of including patients and patient research partners in their research process. I continue to see more collaborative opportunities for patients to get involved, and I think that interdisciplinary research teams which consider patient perspectives are becoming more common. I think that the next crucial step is not only for patients to be involved, but for the patient partners to include people of colour who continue to be underrepresented in skin research.

4. What are the roles and contributions of Patient Research Partners (PRPs) to SkIN Canada and skin research? As a patient research partner at SkIN Canada, you help to provide your own perspective, as well as the perspective of other skin patients, on the different SkIN Canada research activities. For myself, this looks like providing feedback at Training Committee meetings, where we develop leadership and training opportunities for research trainees. Overall, PRP’s ensure that patient perspectives are taken into account at each step of the research process, which ensures that the research continues to benefit patients at the end of the day.

5. In your view, what are some of the obstacles that may dissuade patients from participating as PRPs? I think that the first obstacle for patients is knowing about these opportunities in the first place. Often times, opportunities to get involved are not advertised widely outside of academic or research spaces, so it can be difficult for everyday patients to find out about them even if they would be interested in joining. The second large obstacle is the time commitment – many patients work full time or more and cannot dedicate time within the work week to participate in a research team on a volunteer basis. It is often those who come from a more privileged background who can afford to take time off to participate, or who have the resources to do so. Lastly, I think it can be intimidating for patients to get involved in an academic research team. Patients may lack trust in the research enterprise for several reasons, or may feel that they will not be able to contribute in an academic setting.

6. How does your participation in SkIN Canada’s Training Committee help advance your work as a skin patient advocate? This role helps me to advance my work as a skin patient advocate, as I am able to contribute to an organization that produces patient-relevant research that improves the skin health of Canadians. Being involved as a patient research partner not only allows me to provide advice on planning, implementing, and evaluating the Network activities, but also be part of a greater interdisciplinary community of skin research leaders. Ultimately, being able to have my voice heard as a skin patient with lived experience allows me to advocate on behalf of the skin patient community effectively, and gives me the necessary platform to give back to my community.