Dr. Helen Dimaras
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Intro: Dr. Helen Dimaras is a Scientist in the Child Health Evaluative Sciences program and Centre for Global Health and Director of Global Eye Health Research at SickKids. She is also an Assistant Professor in the Department of Ophthalmology & Vision Sciences, Faculty of Medicine, and Division of Clinical Public Health,  Dalla Lana School of Public Health, at the University of Toronto. Additionally, Dr. Dimaras is an honorary lecturer at the University of Nairobi. Her research interests involve global health, cancer genetics and clinical science. Her main focus is on reducing the global retinoblastoma survival gap around the world.

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Q: How did you get involved with global health and retinoblastoma research?

My original motivation in graduate school was to find a cure for cancer. I went to studied molecular and medical genetics and during my program, I interviewed with Dr. Brenda Gallie in hopes of joining her lab. When I first met with her, hanging on the wall of her office was a poster of a child from India who was clearly suffering from a large, extraocular eye tumor. I turned to Dr. Gallie and asked, “Is retinoblastoma more prevalent in India?” She informed me that the incidence of retinoblastoma is constant worldwide, but there were more cases in India because of the higher population and birth rate. At the time, children with retinoblastoma did very poorly there. I went on to complete  a PhD in the Gallie lab, and though my work was focused purely on molecular genetics in a high income context, the image of that child in the poster stayed with me. 

Throughout my training, I had an interest in global health, but at the time, few people were thinking about cancer in a global context. I thought that maybe I could meld the two. I met Dr. Helen Chan, a former oncologist at SickKids, who did work on multi-drug resistance of retinoblastoma and had set up a clinical trial in multiple sites in Canada. She was looking for someone to help expand the study to other countries, including India. I took the opportunity to do a post-doctoral fellowship with her to learn about clinical trials in an international context gain a better understanding of retinoblastoma around the world. 

Q: Can you tell us about your work with the doctors and researchers in Kenya?

During my time as a post-doctoral fellow at SickKids, I also had the opportunity to continue working with Dr. Gallie, this time to help launch the Kenyan National Retinoblastoma Strategy (KNRbS) group. In 2007, Dr. Gallie visited Kenya with Daisy’s Eye Cancer Fund (now World Eye Cancer Hope). She was inspired to learn more about retinoblastoma in Africa after Rati, a patient of hers from Botswana, passed away. In Nairobi, she met Dr. Kahaki Kimani, an ophthalmologist who was interested in building a national retinoblastoma strategy for Kenya. In Canada, we had developed clinical guidelines for retinoblastoma and the doctors treating retinoblastoma in Kenya wished to do the same. My first role on this project was to help write a grant to the Canadian Institutes for Health Research, requesting funds for the first working meeting of the KNRbS group. This meeting took place in September 2008, where clinicians, researchers, patient families and government representatives worked together to define the challenges associated with retinoblastoma and design and map out solutions to address them. Two of the first research papers I contributed to, led by investigators in Kenya, were about mapping the location and numbers of patients diagnosed with retinoblastoma, where they were treated, and how they responded to treatment. We continued to conduct research and design health service delivery interventions, including a mechanism to provide timely and high quality cancer histology services to retinoblastoma families.

I still work closely with collaborators in Kenya to study and document changes in clinical care to learn what is working and what is not. Last year, the Addis Ababa University in Ethiopia partnered with Emory University and held their own national strategy meeting for retinoblastoma, modeled on our published experience in Kenya. When it comes to capacity building in global health, it must go beyond the outdated model of ‘expert’ doctors from developed countries training clinicians in developing countries; it requires joint leadership and equitable partnerships, planning and coordination with existing local health services, and human and material resources beyond just what is associated with medicine, including the participation of researchers and patients. I believe that the national strategy model, although not perfect, does a little bit more than just training alone.

Q: You have contributed to the global health field in multiple ways, what is your role as a teacher in the global health field? 

I teach a global health research course in the Human Biology program of the University of Toronto. I was invited to create and start teaching the course while I was still a post-doctoral fellow, after I gave a guest lecture about the early stages of the Kenyan Retinoblastoma Strategy group. The course covers not only research methods for global health, but also highlights the importance of developing strong international partnerships to decide on research priorities, roles and responsibilities of study teams. 

 I also mentor students to conduct independent research projects in Toronto and abroad. In 2012, the Center for International Experience at the University of Toronto reached out to me wishing to expand international opportunities for current students. However, this type of activity can be problematic, especially if the needs and capacity of partner institutions abroad are not taken into account. In collaboration with Daisy’s Eye Cancer Fund in Kenya, we decided to participate on a trial basis with one student. We used this opportunity to develop and describe a novel model for student participation in global health projects, centred on participatory observation and critical engagement of the student with local partners.

Q: Can you tell us about your involvement with the student research exchange program?

The experience from that first student and several others that followed led to the development of a bidirectional research exchange between University of Toronto and University of Nairobi students, funded by the Queen Elizabeth II Diamond Jubilee Foundation (QEIIDJF). The QEIIDJF supports international experiences and exchanges between university students in Commonwealth countries, such as Canada and Kenya. 

My colleagues on this project, based at the University of Nairobi Department of Human Pathology, were active members in the KNRbS. Essentially, our collaboration in the KNRbS, specifically in the joint determination of research priorities and co-development of grant applications, gave us the skills and instilled the confidence in our team to apply to the QEIIDJF in the first place. The projects the students work on are not limited to retinoblastoma, and include other related cancers, such as breast cancer. A central goal of this program is to advance capacity in genetics at the University of Nairobi, as there is a need to provide clinical genetic services to cancer patients, as well as an interest to study local cancer specimens and uncover their potentially unique molecular features. Whereas many might think genetics is a luxury not relevant to patients developing countries, it’s very important in cancer care, and our research shows that Kenyan patients are demanding it. The University is essential to building sustainable scientific and clinical capacity in genetics, by providing quality educational programs that will train the next generation of scientists and clinicians who will improve cancer care. 

Q: How is awareness for leukocoria-related eye diseases being created in Kenya?

Early on in the KNRbS, awareness posters were developed with images of local affected children and information in Swahili. Due to the involvement of government stakeholders in the KNRbS, retinoblastoma-specific information was included in the Maternal and Child Health booklet, a resource given to new parents to guide their well-baby visits at community health clinics. 

Last year, one of the QEIIDJF exchange students worked with the retinoblastoma team in Nairobi as well as cancer advocacy organizations to develop a retinoblastoma awareness video. The video consists of a short animation with a simple message: if you see a white reflex in your child’s eyes, have their eyes checked by a doctor. The video gives contact information for clinics in Kenya. This year, another QEIIDJF student has developed a plan to disseminate the video through partners with high-traffic websites and large social media viewership; we will collect metrics to learn when and how often the animation is viewed,  shared and utilized. We want to try to get some idea of how the public consumes these kinds of messages and what might be most effective at reaching our target audience such that appropriate action is taken. 

Q: What do you hope to see happen in the next five years if you are successful in blending awareness with treatment and research in developing countries?

Ultimately, parents and the public need to be made aware of the early signs of retinoblastoma, and upon recognizing those signs, be empowered to seek medical attention for children immediately. Prompt diagnosis will lead to more lives saved, ideally with good visual outcomes.  There is no reason why this can’t be the reality around the world. We will do this by disseminating key information broadly and in a sustained fashion, while systematically studying our approaches to learn what works most effectively. Coupled with targeted improvements to healthcare capacity for retinoblastoma, supported by academic institutions and medical facilities, children with retinoblastoma should have the best chance at survival with good vision no matter where they live.

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