Clinical trials and other medical research that involves those on the spectrum can too often be exclusionary and limited. In order to approach research within the autistic community with respect, ethical considerations need to be addressed, particularly in regards to sex and gender, level of support needs, communication modes, and other demographic information. With these things in mind, it’s possible to create a more inclusionary atmosphere for research into autism spectrum disorders.
Concerns
When researching autism spectrum disorders, the exclusion of marginalized subgroups is a major concern. This often stems from lack of accommodation to support needs, unwillingness of research teams to travel to patients, and the use of unsuitable and exclusionary language.
Particularly in day-to-day research, it’s often the case that procedures are constructed without the input of members of the community which they affect. There are many challenges involved in Autism research, particularly when autistic children are involved, presenting issues with autonomous decision making and informed consent hurdles.
Solutions
The most recent research which has involved input from autistic people suggests that to encourage inclusion, respect, and autonomy, there are five main pillars which should be considered in research. These, called “person-oriented research ethics” are excerpted from a body of research collected by Casico et al., 2020, as follows:
“1. individualization (e.g. providing individualized support for participants),
2. acknowledgment of lived world (e.g. acknowledging barriers to care that impact research ethics),
3. empowerment in decision-making (e.g. creating accessible consent processes that address specific communication needs),
4. respect for holistic personhood (e.g. addressing sensory and processing needs and strengths), and
5. focus on researcher–participant relationships (e.g. involving autistic people in ways other than research participants, including but not limited to via participatory research).”
Where do we come in?
Here at Citruslabs, we prioritize patient wellness and education throughout the recruitment process. We can help you to ensure a dignified, respectful recruitment and onboarding process for any of your research, including clinical studies involving autistic people.
Want to learn more?
Citrus is a fully integrated recruitment and retention software that fits any clinical trial and simplifies the implementation of patient engagement in your clinical trial. Whether you are already working with CTMS systems or not, Citrus is the perfect add-on to make patient interaction effective.
Since 2015, our team has been hard at work raising awareness of clinical trials across the globe. A Forbes ‘30 Under 30’ company and a graduate of the renowned Techstar program in New York, Citruslabs is at the forefront of patient recruitment and retention technologies. With over 3 million patients now recorded on our databases, our patient recruitment dashboard is fast becoming the most efficient method of trial recruitment.
Now a #1 health app in 17 countries, our Mindmate app is helping to revolutionize the way we think about healthcare. Mindmate “[takes] senior care into the digital age” (Forbes, 2018) by providing people with the cognitive decline the essential tools to help them rebuild and maintain strong mental health. Trusted by millions of users, our health community continues to grow as the content available expands to the needs of individuals today.
With more than 200 research sites now using the Citrus platform to screen thousands of patients every month, researchers are now well on their way to finding new treatments for hundreds of different health conditions - something that just would not be possible without a technological solution. Make sure that your clinical trial is in the lucky 12% and turn that luck into guaranteed results with Citrus.
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