PIUO

2017-18 Report to Community Now Available

The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2018 is now available. 

A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.

Our Report to Community is also available in French

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."