Training

Meet 2017 Summer Studentship Recipient: Simon Robins

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Simon Robins, one of our 2017 Summer Studentship recipients, and read his reflections on his time at CHILD-BRIGHT.   

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Name: Simon Robins
Studying: Master of Library and Information Studies, UBC
Focus of summer internship:
CHILD-BRIGHT Optimizing the Management of Pain and Irritability project

 

"Through the CHILD-BRIGHT summer studentship program, I’ve been able to assist my research team in developing an outreach strategy which ensures successful knowledge translation of our research process and outcomes to a broader audience through a new website. The research project being communicated is titled “Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments,” and is led by Dr. Hal Siden. This study evaluates the assessment and management of pain and irritability in children with neurological impairment. This is a randomized, multi-site trial of a clinical pathway to focus and streamline the evaluation and assessment of this population.

I made sure to keep in mind the importance of creating a website which is oriented towards patients and their families and is easily understood by non-academics.

To effectively translate this online knowledge and revise existing content on Dr. Siden’s past projects, I relied heavily on the patient-oriented research articles and the webinar discussions from the summer studentship program. Above all, I made sure to keep in mind the importance of creating a website which is orientated towards patients and their families and is easily understood by non-academics. I primarily achieved this by implementing a user-friendly design and by testing our content on our Family Advisory Committee (upcoming).

For the bulk of my project, I re-designed and drafted new content for PedPalASCNET's website using WordPress. To begin, I reviewed existing content from other lab websites, and drafted content based on trends I found. I then planned interviews to gather families’ stories on their experiences participating in our research, and to test the early designs and content to make sure that they are usable and understandable. Focus groups have been scheduled to gather similar feedback from families.

In addition, I managed PedPalASCNET’s social media/mailing lists. This work with social media directly informed our ongoing outreach strategy by allowing me to analyze our twitter data, our website usage through Google Analytics, and the analytics on our MailChimp emails. We made an effort to find twitter users who identified as families of sick children and track which tweets were popular. As a result, the research network now has a better sense of what the research and patient communities engage with the most, and we have tailored our web content according to these trends.

I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers.

As a library and information studies student I am highly interested in outreach and scholarly communications within academic libraries and research networks, and I feel I have gained greater exposure to this type of work by helping to redesign the website and conduct outreach through social media and patient interviews. Through weekly tweets and retweets about current event articles and the latest academic research, I feel more confident about my ability to generate engagement and attract new followers within the research, patient, and caregiver communities. I also feel more confident about my ability to translate knowledge within websites by employing user-centred design and by framing complicated research topics into language that is easier to understand. This above all depends upon caregiver and patient feedback.

In the future I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers."

 

Meet 2017 Summer Studentship Recipient: Chelsea Yeo

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada. Meet Chelsea Yeo, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Chelsea Yeo
Studying: BSc (Psychology), St. Francis Xavier University
Focus of internship:
CHILD-BRIGHT Strongest Families Neurodevelopmental project

"The opportunity I had to work on the Strongest Families Neurodevelopmental CHILD-BRIGHT research project opened my eyes to patient-oriented research and what it involves. I learned from collaborating with parent advisors, synthesizing their thoughts and ideas, and learned about the program's themes. Not only did this studentship give me the opportunity to experience a different type of research process, it helped me to see its value.

Everyone has a story that makes their experiences, ideas and thoughts unique.

As a young career-minded individual, I believe that working on the SF Neurodevelopmental project reinforced my pre-existing beliefs concerning the value of others’ experiences and will help me in my career going forward. Everyone has a story that makes their experiences, ideas and thoughts unique. This speaks to the importance of being open and able to listen.

Hearing the stories and speaking with parents about obstacles they’ve overcome allowed the intervention to be more specific to the needs of children with disabilities and their families. Specifically, there were many things that these parents experience that can’t be found in a book that made their advice invaluable to our project.

Going forward I will apply this lesson to my career path but also to life in general."

Meet 2017 Summer Studentship Recipient: Elisa Lau

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Elisa Lau, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Elisa Lau
Studying: BSc (Integrated Sciences with a focus on Genomics and Neurobiology), UBC
Focus of summer internship:
CHILD-BRIGHT IMAGINE project

"I’ve learned so much over this past summer. 

In May I was invited to join the Friedman Lab at UBC as a research assistant on the IMAGINE project, which is a diagnostic study aimed at finding genetic causes for atypical cerebral palsy. It was an amazing opportunity to gain research experience within a clinical setting, and work with a complex team of health care specialists. This was especially valuable to me because I hope to pursue genetic counselling after completing my undergraduate education. 

I was also given the opportunity to design an information tool to describe metabolomics to the lay public.

I was fortunate to become involved in IMAGINE right from its beginning. This allowed me to not only directly witness the process of shaping an international research project, but also assist in many of its aspects. My mentors guided me through data handling, clinical chart reviews, specimen collection, presentation skills, and how to properly and respectfully interact with patients and their families.

I was also given the opportunity to design an information tool to describe metabolomics to the lay public. Having just completed an introductory cell biology course in the spring, it was quite the learning curve! Clinical knowledge aside, as an unseasoned student worker, some of the most mundane tasks like juggling a spreadsheet, or planning an effective filing system for data presented as unexpected little challenges to me. 

I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more.

Working with the Friedman team completely expanded my view of the genetic counselling profession beyond the limited scope of the information available online. I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more. It is a new and evolving field, and I am very excited to hopefully be part of it in the future. I am thankful to the CHILD-BRIGHT Network and everyone at the Friedman lab for providing me with this studentship experience." 

 

Meet 2017 Summer Studentship Recipient: Liel Cohn

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Liel Cohn, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Liel Cohn
Studying: BSc (Life Sciences), McMaster University
Focus of internship:
CHILD-BRIGHT Training Program

"The CHILD-BRIGHT Summer Studentship  provided me with the incredible opportunity to learn about new developments in research and the importance of patient involvement. Through engaging webinars and interesting readings, not only did I gain a new perspective but I also developed tools that will help me incorporate patient-oriented research into my current and future research endeavors.

By educating patients and their families properly, and involving them in the research projects, physicians and scientists are able to provide what seems to be the most effective care, leaving the patient feeling more comfortable and confident than ever before.

For my final project, I received the task of constructing a Venn diagram that compares and contrasts patient-oriented research with traditional health research. This project helped me recognize the faults in the traditional methods, while also highlighting the challenges in properly incorporating patient-oriented research in common practice. Despite being challenging, I now feel that patient-oriented research is the future model for research studies and is essential in promoting and developing the concept of individualized medicine.

Overall, this experience has further established my interest in patient-oriented care and research in the health care field."

Meet 2017 Summer Studentship Recipient: Shannon Morrison

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Shannon Morrison, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Shannon Morrison
Studying: Master's (Social Work), McGill University
Focus of internship:
CHILD-BRIGHT Strongest Families Neurodevelopmental Project

"This summer I had the opportunity to not only learn about patient-oriented research through the CHILD-BRIGHT Student Fellowship but to also experience how this type of research is done through my involvement with CHILD-BRIGHT’s Strongest Families Neurodevelopmental Team.

I feel that I cannot proceed with future projects without thinking about who I should be talking to from the community.

The value of hearing feedback from families and patients who are able provide comments on the direction, goals, and methods of a project that are grounded in their lived experience has been undeniable. This experience will affect any future research endeavors.

I feel that I cannot proceed with future projects without thinking about who I should be talking to from the community where the research will be based and how to incorporate their thoughts and ideas into the project so that it can create outcomes that are meaningful and useful for their community. "

Meet 2017 Summer Studentship Recipient: Brett Paffrath

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Brett Paffrath, one of our 2017 Summer Studentship recipients, and read his reflections on his time at CHILD-BRIGHT.

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Name: Brett Paffrath
Studying: BSc (Biology), University of Calgary
Focus of internship:
CHILD-BRIGHT Enhancing Brain Function with Non-Invasive Stimulation Program

As a studentship recipient for the CHILD-BRIGHT Network, I worked with the Calgary Pediatric Stroke Program (CPSP) team at the Alberta Children’s Hospital as part of the Enhancing Brain Function with Non-Invasive Stimulation project. This summer not only taught me the skills to succeed in the research world, but also caused the discovery of my true-self.  My experiences this summer changed my life forever.

More specifically, I worked on a project on "Source Localization of Pediatric Brain-Computer Interface (BCI) using Electroencephalography (EEG)." My project taught me numerous clinical research skills, including experimental design, data collection and management, method development, statistical analysis, and presentation. However, to me, the most important part of the experience was how much it allowed me to grow as a person and become comfortable with myself.

My work with the CPSP team was an enormous eye-opener to the scope and magnitude of patient-oriented neuroscience research. I cherished the exposure I had to so many academic paths, with the cross-over of a multitude of interesting departments such as Neuroscience, Bioengineering, Computer Science, Occupational Therapy, and more. Having an extensive history with computers and a love for understanding biological data, biotechnology and bioinformatics really peaked my interest for future career paths.       

There was so much satisfaction gained from seeing a child, who had been working so hard for weeks on a goal that he had outlined, finally achieve his dream.
— Brett Paffrath

While I was never directly involved with participants for my own study, as I was responsible for the data analysis portion of the project, I had plenty of opportunities to interact with patients of other CPSP studies and I gained a great appreciation for patient-oriented research and its benefits. There was so much satisfaction gained from seeing a child, who had been working so hard for weeks on a goal that he had outlined, finally achieve his dream. 

Working in the lab, I had not colleagues and bosses, but friends and mentors. Immediately, I felt accepted into their circle and loved every moment with the close-knit community. The pleasantness of my experience on my amazing project with my wonderful team, has massively boosted my own intellectual and social abilities and removed all doubts I had about my future.

I cannot thank the CHILD-BRIGHT Network and every member of the CPSP enough for allowing me this amazing opportunity that has truly changed my life for the better.

New Partnership to Advance Building Capacity in Patient-Oriented Research

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CHILD-BRIGHT is pleased to announce a new partnership with the Canadian Child Health Clinician Scientist Program (CCHCSP), Ontario Child Health Support Unit (OCHSU), and the BC SUPPORT Unit, to support the development of a Patient Oriented Research Curriculum in Child Health (PORCCH). Together, as part of this new partnership, CHILD-BRIGHT will support the development of five novel online modules in patient-oriented research in child health, with the first of these expected to launch in early 2018. 

PORCCH is a collaborative effort funded through the Ontario SPOR SUPPORT Unit Working Group for Training and Capacity Building that involves patients and families, health care professionals, clinician scientists, and education researchers and aims to build an interactive online curriculum on patient-oriented research to better train Canada's next generation of researchers as well as patient and family research partners. 

CHILD-BRIGHT, the BC SUPPORT Unit, OCHSU and CCHCSP share a common objective in advancing patient-oriented research training in Canada. 

The Canadian Child Health Clinician Scientist Program (CCHCSP) is a training program currently composed of 17 participating Child Health Research Training Centres that is dedicated to training the next generation of child and youth scientists within an interdisciplinary framework. CCHCSP provides support for these highly qualified child health clinician candidates to develop their requisite knowledge and skills.

The Ontario Child Health Support Unit (OCHSU) – co-located at SickKids and CHEO – supports patient-oriented child health research in Ontario. At SickKids, a Clinical Trials Unit provides methodological expertise in innovative clinical trials and health economics; at CHEO, a Data Hub provides methodological expertise in the acquisition and management of routinely collected health and social data. OCHSU provides methodological support, leads capacity-building initiatives, and has developed data platforms to support child health research across Ontario. 

The BC SUPPORT Unit is a multi-partner organization created to support, streamline and increase patient-oriented research throughout British Columbia. The Unit is one of 10 SUPPORT Units established across the country as part of Canada’s Strategy for Patient-Oriented Research (SPOR) led by the Canadian Institutes of Health Research (CIHR).

To read more about CHILD-BRIGHT’s mandate under CIHR’s SPOR initiative, click here.