Webinar: Genomics in Focus: Facilitating Shared Decision-Making with People with Intellectual Disability
The 21st of May the Centre for Genetics Education hosted a webinar.
The name of the webinar was
Genomics in Focus: Facilitating shared decision-making with people with intellectual disability.
The session focused on how to help people with intellectual disability make their own health care choices.
Genomic testing is becoming a standard part of healthcare, and it is important that everyone can understand what these tests mean. With the right support, people with an intellectual disability can, and want to, make informed decisions about their own bodies and treatments.
The GeneEQUAL team shared the toolkit called GeneEQUAL Choices, which was created side-by-side with people with intellectual disability.
The team shared everyday tips for health professionals on how to communicate clearly, give patients real choices, and use visual decision-making tools. They also discussed how to navigate complex situations, like working with legal guardians or what to do when a patient and their family disagree.
While this event focused on genetics, these communication tools can be used to make all areas of health care more accessible.
People with intellectual disability, their support people and health care workers should watch these videos to learn about Millie’s genetic testing journey and informed consent.
Introduction to Millie’s journey
Webinar: The power of together
In our webinar, you will hear from GeneEQUAL’s researchers and co-researchers.
We will talk about
the value of working together with people with intellectual disability
‘how to’ work with people with intellectual disability (co-production)
Tips and resources to support people with intellectual disability in their choices about and access to genetic tests
Webinar: The GeneEQUAL team on co-production
In our webinar, you will hear from GeneEQUAL’s researchers and co-researchers.
We will talk about
our experiences with the co-production process, and
how this has led to an impactful resource and empowerment for people with intellectual disability.
The videos show three different genetic health care meetings.
People with intellectual disability and their support people should watch these videos to learn how genetic health care can be respectful, accessible and inclusive.
The videos are pretend
but based on people’s real experiences.
The first video (Take 1) shows poor practice.
The health care professionals
use negative words that can make people upset
ignore people with intellectual disability.
At the end the videos we ask health professionals to think how a person with intellectual disability would feel.
The second video (Take 2) shows
respectful,
accessible and
inclusive practice.
In the second video health professionals follow the guidelines from the GeneEQUAL project.
It shows how happy the person with intellectual disability is when health care is done well.
It asks health professionals how they may change what they do after watching the video series.
People with intellectual disability and their support people may like to watch these videos to learn how health care should be.
