WG1: The interdisciplinary co-production team
WG1 will work with people with intellectual disabilities and relevant stakeholders to focus on the co-production of a knowledge base about cancer prevention strategies for people with intellectual disabilities across the EU. This process uses peer learning to constitute the exchange of information between people with intellectual disabilities, carers and healthcare professionals.
- Develop a protocol on how to evaluate the inclusiveness of cancer prevention programmes including equitable access to screening based on a current literature review together with feedback from clinicians, people with intellectual disabilities, family members and other relevant stakeholders using online focus groups and questionnaires. The key foci will be to establish how people with intellectual disabilities and their relatives perceive cancer prevention and access to screening programmes; and how involved are people with intellectual disabilities in the decision making process to participate in such programmes.
- Organise a training school about cancer prevention programmes and factors impacting on equality of access for and with people with intellectual disabilities.
- Organise STSM’s to facilitate training and knowledge exchange from experts across Europe.
- Liaise with the WG4 to ensure reports and working papers are published from working group meetings and information is disseminated thought the Action’s website; together with the other WG’s, overseen by the MC, and participate in organising the Action conferences.
Task 1Creation of an international interdisciplinary team of relevant stakeholders inclusive of people with intellectual disabilities from the COST countries involved.
Task 2Exchange co- produced knowledge in order to develop an understanding of factors which impede or facilitate cancer prevention efforts among people with intellectual disabilities via online platform such as online focus groups and questionnaires with the support of advocacy groups/ carers underpinned by the principles on Patient Public Involvement (INVOLVE, 2020).
Task 3Suggest what kind of research and/or training would be necessary to ensure cancer prevention strategies targeted to the unique needs of people with intellectual disabilities as well as progressing the state-of-the-art in this area.