Producing a Documentary as a Science Communication Project for a Research Institute
Project: Neuroethics documentary
Locations: Abbotsford, Canada; Vancouver, Canada; online
Industries: Innovation, Technology, Healthcare, Science Communication
Date: June 2021- June 2022
Format: Documentary
Links: Seizing Hope Film
Background
Epilepsy is the most common childhood brain disorder, affecting over 600,000 youth in Canada and the USA. The most common epilepsy treatment is anti-seizure medication – yet 30 percent of youth with epilepsy continue to have seizures while on these medications. This condition is known as pediatric drug-resistant epilepsy (DRE).
Brain surgery can help treat pediatric DRE. Because it is invasive, doctors and researchers are developing alternative procedures and equipment for diagnosing and treating pediatric DRE. The various neurotechnologies for pediatric DRE have unique features, risks and benefits.
While many educational resources are available to parents and guardians of youth with pediatric DRE, quality is variable. As a result, parents and guardians of youth with pediatric DRE may struggle in their decision-making process.
With this in mind, Neuroethics Canada – a research group located within the University of British Columbia – asked Conexkt to help them share findings from a years-long research project exploring the features and ethics of neurotechnology for pediatric DRE.
To execute this vision, we used design thinking: a methodology that engineers a thorough understanding of the users who will engage with the product to pinpoint their problems and efficiently solve them.
The Challenge
Communicate the findings from a years-long Neuroethics Canada research project that makes parents and guardians of youth with pediatric drug-resistant epilepsy feel informed, supported and confident in their decision-making when pursuing neurotechnology as a treatment method.
Press
Young epilepsy patient has rare brain surgery to fight for her life. Vancouver Sun. July 1, 2022
On The Coast with Gloria Macarenko. New documentary "Seizing Hope" premieres today. CBC. July 6, 2022
“Thank you for creating an impactful, thoughtful, informative, compassionate, and beautifully-composed film. I gained a lot from attending the premiere and wish you every success in disseminating your important work.”
“These families were so courageous to come forward and share their stories with us and allow us to bring the research results together with them to the public.”
The Method
The first step of any effective science communication initiative is to craft an in-depth understanding of the users who will be engaging with the product. This is the guiding principle of the first stage of design thinking. For this reason, we conducted the initial user interviews with families. We also developed two versions of an audience preference questionnaire – one for healthcare providers and one for caregivers – to learn where, when, with whom and how they prefer to engage with the film topic. In conjunction with Neuroethics Canada’s research insights, responses to this questionnaire helped us formulate a series of empathy maps and user personas. We were able to identify and define the main problems they are facing in the context of this research topic and apply them to the film's underlying message. The final phase of our research and conceptualization process was to determine our product's logistics and apply them to a comprehensive strategic plan.
The Solution
We produced an educational documentary exploring the features and ethics of neurotechnology for pediatric DRE. This film tells a story about hope -hope that improved quality of life is possible for youth and families mitigating pediatric DRE through the developments in neurotechnology. The documentary has now been submitted to a dozen film festivals for broader circulation. Once the festival season is over, we will showcase it to scientific conferences and university venues and publish it online. To help disseminate the documentary, we designed a website and different toolkits: A media toolkit, a screening kit, educational kit.