DESCRIPTION OF WORKING GROUPS, TASKS AND ACTIVITIES
COHERENCE AND EFFECTIVENESS OF THE WORKPLAN
In order for this Action to succeed the Management Committee (MC) will coordinate the activities of the Working Groups (WG). The main task of the MC will be to supervise and coordinate the WG’s activities. In this Action this task is particularly important since the basis of the whole Action centres on the coordination between people with intellectual disabilities and interdisciplinary stakeholders to tackle specific areas of interest in cancer prevention activities. The MC will have at least one named member from each of the participating countries. The MC will also implement gender policies aiming at a balanced representation of women and men in the MC itself, WG leaders, and STSM’s amongst others. From the outset the current CUPID network has a good gender balance. It will also follow the involvement of Early Stage Researchers in the Action, using available tools to enhance their career opportunities. Finally, the MC will continually seek new partners to drive the Action forward, especially from Inclusiveness Target Countries.
DESCRIPTION OF WORKING GROUPS
Cooperation within the COST Action is organised around four closely interconnected WG’s working in parallel. The rationale for establishing the WG’s is twofold. First there is a need to exchange knowledge and expertise between the different groups that constitute an interdisciplinary approach to understanding integrated cancer prevention efforts for and with people with intellectual disabilities on many levels: co-production of a research agenda and knowledge base with people with intellectual disabilities and relevant stakeholder groups and at the level of policy making and resource provision. Second the timeline of the Working Groups is created to drive the Action towards the specified outcomes and enable coordination of European efforts in determining which way a multidisciplinary approach will be the most effective while meeting the rights of people with intellectual disabilities for equal access to healthcare in accordance with Section 25 of the UNCRPD.
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.
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.
Cancer prevention policies: audit and evaluation
WG2 will focus on EU policy in the area of cancer prevention and unique challenges of access to cancer screening programmes across the partner countries.
Task 1Exchange knowledge and experiences in order to identify how different national health systems function in the way they deliver cancer prevention initiatives and screening programmes in the participating COST countries.
Task 2Agree, create and conduct an audit and evaluation in order to compare the different health systems in the participating COST Action, so a comparative analysis can be completed.
Task 3Create and conduct an audit and evaluation to identify whether people with intellectual disabilities have equal access to care in the area of cancer prevention.
Task 4Identify research and/or training which would be necessary to improve current health systems in relation to the provision of cancer prevention strategies and targeted screening programmes in order to improve equality of access to such initiatives as well as progressing the state-of-the-art in this area.
Universal EU Cancer prevention strategy methodology
WG3 will focus upon combining the outcomes from WG’s 1 and 2 into a comprehensive plan for a multidisciplinary approach to develop a research agenda for a universal EU cancer prevention guideline that is responsive to the unique needs of people with intellectual disabilities. Development of this strategy will take into account the following key areas: 1) improving the overall health of people with intellectual disabilities taking into account the recommendations of the European Code of Cancer; and 2) responsiveness to ensure all people with intellectual disabilities should have the same right to access cancer screening programmes and that their unique needs are taken into account in the ecological approach to care provision including economic and literacy requirements
Task 1Exchange knowledge and experiences based upon WG’s 1 and 2 in order to design a research agenda to design guidelines for a minimum standard of equitable access to cancer prevention initiatives and screening programmes implementation beyond the Action.
Task 2Generate a research agenda to develop guidelines for the different health providers of the necessary knowledge, skills and competencies needed to meet the standard-of-care requirements along with appropriate evaluation designs to investigate the outcome for each speciality.
Dissemination and Outreach
WG4 focuses on the dissemination of the Action and its activities and deliverables through a purpose designed accessible website, social media platforms such as Facebook and Twitter, blogs, open access journals, newsletters, accessible information reports and infographics, and Youtube Videos. The Action’s website and social media networks serve as the main communication channels between Action members and all relevant parties (researchers, clinicians, healthcare providers, intellectual disability organisations, advocacy groups, policymakers, screening staff, people with intellectual disabilities and carers).
Task 1Create an open access accessible CUPID Action website with all project information, including the database of experts in the field, and instructions on how to join the Action.
Task 2Actively recruit COST Action members to participate in conferences, workshops, meetings and particularly Early Stage Researchers in Training Schools.
Task 3Co-ordinate, facilitate and promote exchange and mobility within partners of the Action, to allow scientists/ Early Stage Researchers access to health care organisations and academic institutions within the network to learn new techniques, measurements or methodologies not available in their home country through STSM.
Task 4Organise webinars on providing updates and information on key emerging areas in the CUPID Action to interested parties.
Task 5Developing annual newsletters, including accessible versions,about project progress.
Task 6Presentations and workshops of the CUPID Action’s achievements at relevant conferences to raise the profile of the important work undertaken.
Task 7Organisation of the final conference in which all the CUPID networks achievements are presented.
Task 8The CUPID network will create a national and EU level roadmap to reach out to policymakers using the principles of the Research to Policy Model for Collaboration. This will help to bridge the research agenda to policy gap.