An update on the Spectrum 10K consultation
This update is to keep people informed of progress on the Spectrum 10K consultation.
The Spectrum 10K consultation is now closed. Thank you for sharing your views and opinions.
What happened in the consultation?
The consultation included a survey, webinars and drop-in sessions. The survey ran from the beginning of March 2023 until 31st May.
Five webinars were held as part of the consultation. The webinars were an opportunity to ask the Spectrum 10K researchers questions about the study. The webinars were held during May and covered the following topics:
Webinar 1: Aims of the study
Webinar 2: Ethics and values
Webinar 3: Inclusion of those who can’t consent
Webinar 4: Data collection and management
Webinar 5: Any other topics about improving or changing the Spectrum 10K study
In addition Hopkins Van Mil and Leneh Buckle hosted drop-in sessions on the same topics. These were an opportunity to discuss aspects of the Spectrum 10K study in addition to attending the webinars or responding to the survey.
What happens now?
Hopkins Van Mil will publish transcripts from the webinar Q&A sessions on its website in the coming weeks. These set out the:
questions that were asked during the webinars
answers to the questions given by Spectrum 10K researchers.
We are now in the process of setting up a co-production group. This is a group of ten people, the majority of whom will be autistic & who will work with Spectrum 10K researchers on improving the study. The group is small so that everyone can work together to make detailed changes in line with what was asked for in the consultation.
The co-production group will carry out detailed work in meetings and in their own time on the following topics:
Co-occurring conditions, questionnaires, consent forms and medical records
Data Access Committee set up and data access policies
Communications and information provision
Involvement of autistic people going forward
Consent withdrawal and the involvement of adults and children without the capacity to consent.
Using qualitative methods Hopkins Van Mil and Leneh Buckle are now analysing the results of the consultation. A report on the consultation and what people said should happen to improve or change the study will be published later this year.
Based on the feedback from the consultation and discussions with the co-production group, the Spectrum 10K team will work to prepare revised study documentation. These documents will be submitted to the Research Ethics Committee for review.
We are grateful to the hundreds of autistic people and carers/parents of autistic people who have taken part in this unique consultation which we hope will exemplify how scientists and stakeholders in the autism community can work well together to enrich autism research.
For further information on the consultation, please email consultation@hopkinsvanmil.co.uk.