About this deliverable
| Project | EU Network of Youth Cancer Survivors (EU-CAYAS-NET), Grant Agreement No. 101056918, EU4Health Programme |
| Deliverable No | D6.1 |
| Work package | WP6 |
| Task | Task 6.1 Communication and dissemination plan, with 6-monthly review |
| First submitted | 9 December 2022 (V1.0, final version submitted to EU4Health) |
| Updated | 24 August 2023 (V2.0, final version of update) |
Version history
| Version | Date | Description |
|---|---|---|
| V0.0 | 26.9.2022 | Initial draft by Arnela Kameric (CCI Europe) |
| V0.1 | 13.10.2022 | Comments by Kylie O'Brien (Pintail) |
| V0.2 | 25.10.2022 | Comments by Carina Schenider and Arnela Kameric (CCI Europe) |
| V0.2 | 01.11 2022 | Comments by Daliana Vigu (Youth Cancer Europe) |
| V0.3 | 15.11.2022 | Comments by the Beneficiaries |
| V1.0 | 09.12.2022 | Final version submitted to EU4Health |
| V1.1 | 01.06.2023 | Initial version of update by Kylie O'Brien (PT) to remove references to Launch event throughout, add LinkedIn to social media, correct funding acknowledgement, update list of Associated Partners and update activities throughout with achievements/current status |
| V1.2 | 19.07.2023 | Review by the Beneficiaries |
| V1.3 | 20.07.2023 | Review by Carina Schneider and Barbara Brunmair (CCI Europe) |
| V1.4 | 03.08.2023 | Review/approval by Management Team (CCI Europe, YCE, PT) |
| V2.0 | 24.08.2023 | Final version of update to V2.0 |
Consortium
| Full Name | Short Name | Number | Role |
|---|---|---|---|
| CHILDHOOD CANCER INTERNATIONAL | CCI Europe | 1 | Coordinator |
| FUNDATIA YOUTH CANCER EUROPE | YCE | 2 | Beneficiary |
| SIOP EUROPE | SIOPE | 3 | Beneficiary |
| PANCARE | PANCARE | 4 | Beneficiary |
| PRINSES MAXIMA CENTRUM VOOR KINDERONCOLOGIE BV | PMC | 5 | Beneficiary |
| PAGALBOS ONKOLOGINIAMS LIGONIAMS ASOCIACIJA | POLA | 6 | Beneficiary |
| FUNDACIO PRIVADA PER A LA RECERCA I LA DOCENCIA SANT JOAN DE DEU | FSJD | 7 | Beneficiary |
| HOSPITAL SANT JOAN DE DEU | HSJD | 7.1 | Affiliated Entity |
| MEDIZINISCHE UNIVERSITAET WIEN | MUW | 8 | Beneficiary |
| PINTAIL LTD | PT | 9 | Beneficiary |
| SURVIVORS ÖSTERREICH – KINDER-KREBS-ÜBERLEBENDEN-INITIATIVE | SurvivorsAT | 10 | Associated Partner |
| Fondation d'Utilité Publique KickCancer | KickCancer | 11 | Associated Partner |
| Association Heart for children with cancer | AHCC | 14 | Associated Partner |
| ASSOCIATION CHILDREN WITH ONCOHEMATOLOGIC DISEASES | ACOD | 15 | Associated Partner |
| Krijesnica – udruga za pomoc djeci i obiteljima suocenim s malignim bolestima | Krijesnica | 16 | Associated Partner |
| Spolecne k usmevu, z.s. | SkU | 17 | Associated Partner |
| FAKULTNI NEMOCNICE U SV. ANNY V BRNE | ICRC | 18 | Associated Partner |
| DEUTSCHE KINDERKREBSSTIFTUNG DER DEUTSCHE LEUKAMIE-FORSCHUNGSHILFE AKTION FUR KREBSKRANKE KINDER E.V. STIFTUNG | DLFH/DKS | 19 | Associated Partner |
| NGO KARKINAKI AWARENESS FOR CHILDHOOD AND ADOLESCENT CANCER | KARKINAKI | 20 | Associated Partner |
| YouCan Cancer Support Network Ireland CLG | YouCan | 21 | Associated Partner |
| CanTeen Ireland | CanTeen Ireland | 23 | Associated Partner |
| FONDAZIONE IRCCS ISTITUTO NAZIONALE DEI TUMORI | INT | 24 | Associated Partner |
| Vereniging Kinderkanker Nederland | VKN | 25 | Associated Partner |
| Fundacja Pani Ani | FPA | 26 | Associated Partner |
| Asociatia Obsteasca Filiala din Republica Moldova a Asociatiei Little People Romania | ALPMD | 27 | Associated Partner |
| Asociatia Little People Romania | Little People | 28 | Associated Partner |
| ASSOCIATION OF CHILDHOOD CANCER PARENT, GUARDIAN, CHILDREN AND FRIENDS Chika Boca | CB&MladiCe | 29 | Associated Partner |
| "Zvoncica" Childhood Cancer Parent Organization | ZVONCICA | 30 | Associated Partner |
| Federación Española de Padres de Niños con Cáncer | FEPNC | 31 | Associated Partner |
| SMILE n.o. | SMILE | 32 | Associated Partner |
| Detom s rakovinou, n. o | DR | 33 | Associated Partner |
| Foundation Little knight | LITTLEKNIGHT_SI | 34 | Associated Partner |
| ON EST LA | ON EST LA | 37 | Associated Partner |
| ACREDITAR – Associação de pais e amigos de crianças com cancro | ACREDITAR | 38 | Associated Partner |
| EUROPEAN ONCOLOGY NURSING SOCIETY | EONS | 39 | Associated Partner |
| Fondatioun Kriibskrank Kanner | Fondatioun.lu | 41 | Associated Partner |
| Sano | Sano | 42 | Associated Partner |
| Childhood Cancer Foundation | CCIRL | 43 | Associated Partner |
1. Executive Summary
The main aim of work package 6 (WP6) 'Communication, Dissemination & Sustainability' is to widely communicate & disseminate the project results and plan for sustainability of the network and Platform post-project. Deliverable D6.1 'Communication and Dissemination Plan' details how the communication and dissemination will flow over the project lifetime. The Plan was developed by CCI Europe in collaboration with YCE, and with input from all beneficiaries and was reviewed/updated in M10 (June 2023).
The Plan includes target audiences, main messages and channels, building on the significant experience of CCI Europe and YCE within the community of children, adolescents and young adults (CAYA) living with and after cancer and other related stakeholder communities. Highly visible network events are also included in the plan to facilitate planning and promotion of the network. Collaboration across WPs 2 and 6 are detailed relating to social media activities, as well as the promotion of Platform content. The Plan defines the creation of a project leaflet, as well as guidance for participants on featuring the project on their websites and social media. The Plan will be reviewed every 6 months by all beneficiaries to ensure it remains relevant, with updates where required.
Communication and dissemination activities will take place throughout the project's lifespan and will go beyond the EU Member States. In addition to using traditional communication and dissemination channels (e.g. news items in society newsletters, quarterly newsletters, conferences/meetings, non-academic/academic publications and workshops), the project will also leverage social media (linked to the Platform in WP2) and other digital and online tools (e.g. webinars via the Platform in WP2, social media campaigns, posts on Platform Facebook Page and Instagram, etc.). In this way, the network will create communities and an online footprint that will endure beyond the project.
2. Internal communication
From M1 – M6, day-to-day communications between and within WPs used a range of tools, including document sharing, email (mailing lists), and video conference platforms. Initially, the network will make use of Google Drive (for document sharing), Zoom (for video conferencing) and project mailing lists, established by PT. From M7, the co-working space via the Platform went live, which includes Discord for communication/online meetings and a shared Google Drive for document sharing. The project mailing lists remain active as a back-up for Discord and Zoom is used for meetings with larger numbers of participants.
Internal communication for the project is managed by WP1 – Network establishment and management.
3. External communication
External communication is essential for maximising EU-CAYAS-NET's impact and for widely disseminating the project results. Communication of the project activities involves reaching CAYA survivors, psycho-social and health professionals, policy makers, as well as creating awareness among the general public. A recognisable project identity has been created and will be used by all beneficiaries and Associated Partners (APs) when promoting the project. A process document describing how to promote the network has been developed and shared with all beneficiaries and APs (M9).
Other activities include development of the project's Platform, creating a leaflet, maximising impact on social media, attending and presenting at relevant events, publishing articles in relevant journals and making a sustainability plan for the network's continuance after the funded project.
External communication of the project is managed by WP6 (coordinated by CCI Europe), in collaboration with WP2 (coordinated by POLA).
3.1 Target audience and main messages
Two workshops of two hours were organized to discuss the tone of voice of the project's external communication, organized by the Karma Agency. The first workshop was with a small scope of people, mainly the Management Team and key persons responsible for communication from CCI Europe and YCE. The second workshop gathered a bigger circle of survivors that are highly active in the project. Both workshops were used to define the target groups of the project's external communication, benefits for them, main messages and means of reaching them (Table 1). Specific phrases to be used for each target group will be defined by WP6 in a later stage.
Table 1 Target Groups and Main Messages
CAYA cancer survivors, as well as young people living with CAYA cancer
- Benefit: Main target groups of the project - they lead the network, ensuring greatest benefit of the project's outcomes by setting the network priorities. As a target audience and ultimate end user, the network's activities will:
- communicate strong, coherent messages about the needs of young people living with and after CAYA cancer across Europe through policy and best practice recommendations,
- build a well-connected, well-informed network of patient advocates (Ambassadors) who will also act as multipliers for the project outcomes and the network's activities,
- ensure more equal, diverse and inclusive representation of young people living with and after CAYA cancer, both in advocacy and healthcare systems,
- strive for a sustainable Platform and network that will continue advancing and improving CAYA cancer issues, and
- create an inclusive community gathering information support and social networking.
- Main Messages: Main messages to CAYA cancer survivors and young people living with CAYA cancer will include promotion of peer support and social networking, sign-posting to relevant information and educational resources, as well as encouraging young people affected by CAYA cancer to become active network participants/users of our network.
- "You feel different as so many other people in this community. You'll find here a safe place with information, support and empathy."
- "You'll be able to exchange, and find the resources and information you need."
- "You'll meet people with the same diagnosis (same treatment, bad effects…) as you have."
- "You'll meet people your age, same situation, feeling the same, going through the same, dealing with the same challenges (going back to work, back to social life)."
- "We will talk to you like no one else will."
- Means of reaching the target group: We will reach this target audience mainly through the Platform, then social media, events, newsletters, website.
Families and friends of CAYA cancer survivors
- Benefit: Important support system and play a role in one's experience with and after cancer. Include families and friends in the platform will provide "support for the support system" enabling them to exchange experience in a separate group, offer advice and also be included in survivors' social networking. This network/Platform aims to:
- raise awareness,
- give access to information and support, and
- give access to a community, peers going through the same situation.
- Main Messages:
- "You'll find how to talk to your friends/family affected by cancer; what to say do and don'ts."
- "You'll find information and advice on how you can support your loved one in the best possible way and how to understand better what is happening."
- "You'll find here a safe place to ask your questions, reply to others' questions."
- Means of reaching the target group: We will reach families and friends through social media campaigns and the platform.
Psycho-social, medical, as well as other health professionals
- Benefit: Benefit directly from the network's activities and outputs, as they will receive recommendations for care that were co-developed by young people living with and after cancer and are therefore reflective of their needs and preferences. Health professionals in the fields of CAYA cancer and other related fields will be able to use our outcomes to inform their own delivery of care.
- Main Messages: Key messages for this audience will include:
- "Information is power. Let's collaborate to empower the youth together."
- "You should tell cancer patients the truth, being a full and open discloser."
- "You should not keep information from patients."
- Means of reaching the target group: We will reach health professionals through traditional, academic dissemination routes (publications, conferences), as well as websites and social media. Also, through educational initiatives, webinars and train-the-trainer activities (WP3 - 6), promoted via the Platform as well as the networks of the consortium.
EU, as well as national, Policymakers
- Benefit: This target group is highly relevant as they set priority areas for future care and research initiatives. EU-CAYAS-NET will bring to their attention gaps in CAYA cancer care, research & socio-economics which have been identified by young people affected by cancer themselves. The Europe-wide network of Ambassadors will be key for informing EU- and national health policy initiatives.
- Main Messages: Key messages to policymakers will include that health care planning needs to take into account the needs of the still highly underrepresented group of young people affected by CAYA cancer.
- Means of reaching the target group: Policymakers will be reached via high-profile EU- and national policy events, social media awareness campaigns and policy webinars and round tables.
Researchers
- Benefit: Researchers in paediatric and adult oncology, psychology, nursing science, health economics will be able to inform their own research in CAYA cancer care and survivorship and other related areas. With this project and the Platform, researchers will be:
- educated about how we think people should be involved in research,
- invited to develop collaborations and not only participation in research about cancer.
- Main Messages: Key messages for this audience will include the great benefits for research of proper patient involvement, and that it is therefore essential that research priorities be set in collaboration with patient advocates.
- "Here is the place where you can find quality and quantity of information about cancer."
- "We can co-create research."
- "Here is a protective and safe space that you can use for your research, once you respect our rules."
- "Nothing about us without us."
- Means of reaching the target group: Researchers will be reached via traditional, academic dissemination routes (publications, conferences), websites and social media, as well as the networks of the consortium.
General public
- Benefit: The general public will gain a broad understanding of the project's objectives.
- Main Messages: Communication materials will also be available for the general public to build a broad base of understanding on why healthy survivorship is important.
- Means of reaching the target group: We will reach this target audience mainly through social media, website, press releases and newsletter.
Media
- Benefit: The media will gain a broad understanding of the project's objective and can act as a means of spreading the word.
- Main Messages: Communication materials will also be available for media to build a broad base of understanding on why healthy survivorship is important.
- Means of reaching the target group: We will reach this target audience through press releases.
3.2 Communication Tools
WP6 has developed communication tools in order to achieve the project's objectives. This includes the project identity, leaflet, definition of usage of social media and press releases, newsletter and list of events that will take place throughout the project's lifespan.
3.2.1 Project identity
A project identity was developed in M1-3 of the project in collaboration with WP2, including templates for presentations and social media posts, as well as the EU-CAYAS-NET logo and colour scheme, font choice, stock images, etc. The identity will be uniform across the Platform in WP2 and materials developed by WPs 1, 3 – 6. Beneficiaries and APs will be provided with a manual including the logo, relevant templates, messaging and overall guidance on consistent use of the project identity for their local communication and dissemination activities.
Responsible for the project identity are CCI Europe and Karma Agency (subcontracted by CCI Europe). The identity development was conducted in collaboration with YCE and with contributions of representatives of all beneficiaries.
The network's logo and colour branding scheme are shown below (Figure 1: Network Logo and Colour Scheme – the "European Network of Youth Cancer Survivors" wordmark with a yellow ribbon, and a three-colour palette of yellow, dark navy and pale blue). Additional colourways are available, as needed (all white, etc.).
3.2.2 Leaflet
A tri-fold leaflet was produced as a tool to communicate relevant information about the project and raise awareness of the nework. The leaflet follows the project identity and contains essential information about EU-CAYAS-NET, including project objectives, contact information and a link to the Platform. The leaflet will be distributed at in-person meetings, such as conferences attended by beneficiaries and APs, to reach our targeted audiences and foster communication about our activities. A second leaflet will follow at the end of the project and will entail information about the network we will sustain. Leaflets will be distributed to partners in a digital form to be uploaded on their websites.
The leaflet was developed by CCI Europe, in collaboration with the subcontracted agency, with a final review by the beneficiaries (Figure 2).
Figure 2: EU-CAYAS-NET Leaflet
- Outer side: "Beneficiaries & Associated Partners – In this project we have: 9 Beneficiaries, 28 Associated Partners", with a map of Europe highlighting participating countries (Ireland, Netherlands, Belgium, Germany, Poland, Lithuania, France, Austria, Italy, Romania, Spain, Portugal) and the logos of the beneficiaries; the network logo; "The network of survivors for survivors".
- Inner side: "EU-CAYAS-NET is a project led by patient advocates under one of the flagship initiatives of Europe's Beating Cancer Plan to build a European Network of Youth Cancer Survivors and to create a knowledge centre and interactive platform for social networking."
- "Leading organisations from 18 countries active in the field will map resources for young cancer patients, survivors and their caregivers, create new European guidelines and empower cancer survivors to advocate for their rights and needs."
- "EU-CAYAS-NET fosters social networking, peer-support, knowledge-exchange and will improve: the quality of life of survivors - including mental health, education & career support, follow-up care and transition from paediatric to adult health care; the care for adolescents and young adults (AYA) with cancer, as well as Equality, Diversity and Inclusion (EDI) along the whole treatment and survivorship trajectory."
- "Want to engage? Our platform beatcancer.eu is an interactive hub where you can get answers to questions, share with like-minded people and last but not least have fun. It is a safe place to share, learn and grow. We welcome everyone dealing with childhood, adolescent and young adult cancer. This includes not only cancer patients, survivors and their caregivers themselves, but also stakeholders from healthcare, research or policy. We would love for you to join us!"
- "Follow us on socials: @youthcancereu (Twitter); @youthcancersurvivors (Instagram, Facebook, LinkedIn, YouTube). United we #beatcancer – beatcancer.eu"
3.2.3 Social media
Facebook, YouTube, Twitter and Instagram were created in January 2023, following the launch of the Platform in December 2022. LinkedIn (to target HCPs and researchers) was created in M7. TikTok (to target survivors) accounts will be explored at a later stage of the project.
Social media campaigns will be delivered around the Closing Event, as well as during high profile awareness events (International Childhood Cancer Day (15 Feb), Survivors' Week (June) and Childhood Cancer Awareness Month (September).
The project's social media accounts (developed alongside the Platform) will be used to communicate the project's objectives, disseminate results and raise awareness, according to the purpose of the respective social media platform (Table 2).
Table 2 Social Media Platforms, with target audience
| YouTube | |||||
|---|---|---|---|---|---|
| CAYA Survivors | x | x | x | x | |
| Families/friends | x | x | x | x | |
| Psycho-social, medical as well as other health professionals | x | x | |||
| EU as well as national Policymakers | x | x | x | ||
| Researchers | x | x | |||
| General public & Media | x | x | x | x |
Webinars from WP2 will be an important communication activity and will be shared on the project's social media platforms.
Hashtags to be used are #EUCAYASNET (for project's internal reporting), #EUCancerPlan (for EU's internal reporting) and #beatcancer.
All social media profiles will acknowledge the EU funding in their respective profile descriptions (as in Annex I, section 1), shortened according to the maximum allowed number of characters.
Social media activities will be coordinated by WPs 2 and 6, with amplification of messaging through the existing channels of all beneficiaries and associated partners. The subcontracted communication agency will assist with organising the social media campaigns and the editorial calendar, as well as provide consultancy in case needed and conduct workshops.
3.2.4 Press Releases
Press releases will be launched around the Closing Event.
These will be done by the subcontracted agency (by CCI Europe).
3.2.5 Newsletters
WP6 is creating a database for the quarterly newsletter, that is integrated into the Platform. WP6 is proactively reaching out to other WPs to gather content. PMC is responsible for coordinating the newsletters. The newsletter 'look and feel' is aligned with the project identity. The newsletter subscription link will be disseminated widely by the project beneficiaries.
The first newsletter was sent out in M8 and the second one in M12.
Additionally, project beneficiaries include news from the projects in their own newsletters.
3.2.6 Events
High visibility of the network is essential to achieving the intended impacts, so several large-scale public events are planned for communication and dissemination, including a:
- 2-day Networking Event (for Ambassadors), coordinated by CCI-E,
- 1 day Policy event in Lithuania, coordinated by POLA,
- 1 day Policy event in Austria, coordinated by CCI-E,
- 1 day Policy event in Spain, coordinated by SJD, and
- 4-days Closing Event during major festival event in Romania, coordinated by CCI-E, YCE and POLA.
To tackle the existing inequalities across Europe, the European Network of Youth Cancer Survivors aims to additionally strengthen, help to build and empower local survivor communities in regions where there are local communities yet, or where the participation in EU-level network events is highly limited due to language barriers. Therefore, WP6 will organise three regional events in the respective local languages.
3.3 Platform
Social networking will be facilitated by the Platform (Figure 3: Platform Home Page) developed in WP2, which will be state-of-the art, appealing and easy to navigate, with content which will be developed over the project duration by WPs 3-5. Content will be available in English (with automatic online translations available in 24 EU official languages), including social media accounts on Facebook, Instagram, Twitter, LinkedIn and YouTube. All deliverables (content materials) developed in WPs 3-5 will also be translated to 8 languages (German, French, Spanish, Italian, Dutch, Lithuanian, Serbo-Croatian, Romanian). The Platform will be the public 'face' of the project and will serve as a Knowledge Hub & Resource Centre. The Facebook page, Instagram, Twitter, LinkedIn and YouTube accounts will publish content in English, but the discussions will happen in multiple languages.
The Platform has:
- provided visibility for the European Network of Youth Cancer Survivors,
- has a public, dedicated resource centre for all advocacy, policy and peer-support activities, including all project materials (e.g. documents, infographics, videos, webinar recordings, etc.), polling, integration toolkits, deliverables,
- has an (internal) virtual co-working/virtual meeting space (available to registered network participants) to facilitate links amongst cancer survivors, carers and social and health professionals and collaborative work by project participants across Europe and act as a vehicle for additional ideation, visualisation and dissemination of project deliverables,
- promotes EU actions and initiatives in the target themes that are of demonstrated benefit to improve the quality of life of young cancer survivors,
- facilitates (external) participation in live events through an embedded video conference facility, available without login for anyone interested in network activities,
- signposts visitors to content for each theme of the project, including national best practice examples,
- is easy to maintain and extend to new themes after the funded period to ensure sustainability,
- has a Search engine optimisation (SEO) on a quarterly basis to optimize meta titles and meta tags to boost organic reach and organic ranking of Knowledge Hub & Resource Centre on search engines in 27 EU Member States,
- has banner campaigns about Platform content for targeted audiences on a quarterly basis in 27 EU Member States,
- is accessible through desktop or laptop computers but also on tablets and mobile devices.
- is interlinked with European Youth Cancer Survivor Network social media accounts on Facebook, YouTube, Twitter, LinkedIn and Instagram, which boosts the awareness about the European Youth Cancer Survivor Network, attract more visitors to the Platform,
- integrated the newsletter, and
- acknowledges EU funding as in Annex (I), Section 1
The Platform is managed by WP2 and their subcontracted agency Media Park, in collaboration with WP6.
The Platform URL is: https://beatcancer.eu/
3.3.1 Peer support on the Platform
Advocacy, policy work and peer support activities are not synonymous. From a technical standpoint, peer support has specific user interface requirements that are separate from the requirements of advocacy and policy work. A clear benefit of being a part of the European Youth Cancer Survivors network is to receive or provide good quality peer support, that also leads to higher engagement of Network participants in policy and advocacy actions.
The project will develop a 24/7 peer-support feature that is accessible via the Platform by integrating a community hub with peer-support functionalities, which has been created by youth cancer survivors. Additional work will be done to improve the existing user experience and user interface, developing backend and frontend features for personal computers (currently peer-support is available on mobile devices only). Accessing the peer support functionalities on the community hub, young cancer survivors will be able to find matching users who have had similar experiences and who are able to offer peer-support and interact through live chat functionality.
3.3.2 Specific activities
The IT infrastructure to host the multilingual network platform and facilitate social networking will be established in WP2, with the content being developed in WPs 3 – 5:
- The Platform was developed in a manner that ensures it is easy to maintain and extend to include additional languages and new themes/content after the funding period ends. This was achieved by developing a Knowledge Hub & Resource Centre specification, creating a content creation strategy, creating social media strategy for Facebook, Instagram, LinkedIn, Twitter and YouTube accounts, use of online advertising tools (e.g. google adwords), creating a Knowledge Hub & Resource Centre prototype with several architecture and design options, collecting feedback from consortium members, revising the Knowledge Hub & Resource Centre prototype, testing all features of the Knowledge Hub & Resource Centre, adopting content creation and social media strategies.
- The content on the Platform was generated by the beneficiaries, associated partners and CAYA survivors from all participating countries through activities in WPs 3 - 5. The Platform has content targeting the audience in the Section 2.2. Along with the IT infrastructure, training materials will be developed during the project, so that network participants can take care of future content updates and extensions, increasing sustainability of the Platform.
- The Platform will host at least 12 webinars based on the topics that have been identified by CAYA survivor groups from CCI Europe and YCE, including the webinars to ensure sustainability of the project.
The Platform will have at least the following sections:
- network, detailing information about Network participants, project deliverables, sustainability of the activities,
- survivorship, providing information tailored to a specific visitor type (patient, CAYA cancer survivor, carer, healthcare professional, general public) on at least the following topics: quality of life, survivorship, access to cross-border healthcare, availability of fertility preservation services, the right to be forgotten (fighting financial discrimination of cancer survivors), lifestyle, nutrition, etc. The content which will be made available on the Platform will be based on existing resources developed by YCE and other consortium members,
- training materials, providing an online repository of pre-recorded training on advocacy, establishing national youth cancer survivors' groups, participating in clinical research,
- peer-support, providing access to other CAYA survivors that are interested in similar topics, ranging from managing side effects to addressing specific issue, like fertility,
- practical recommendations, providing infographics, publications, action plans and policy papers for the content generated in WPs 3 - 5,
- registered users will have access to co-working space, providing a virtual environment for Network participants to have Open Space discussions on the topics that matter to them, facilitating discussions and creating additional content for the Platform.
The Platform will use patient-friendly explanations and will signpost to information sources and best practice examples – important tools to promote understanding and generate action. The Platform will provide access to up-to-date information that is specific to different local/national contexts, directly empowering and enabling patients to participate more actively in their care and decisions about their health. The network will ensure that survivors are aware of their rights and make appropriate use of available resources.
3.3.3 Social media accounts on the platform
Social media accounts on the Platform:
- the content created during the project will be shared not only on the Platform but also on the EU-CAYAS-NET dedicated YouTube, Facebook, Twitter, LinkedIn and Instagram accounts, by adapting visual and audio content as appropriate,
- social media campaigns on Facebook and Instagram in 27 countries will promote the Platform, its content and upcoming webinars throughout the duration of the project,
- webinars will be live-streamed on the EU Youth Cancer Survivors Network Facebook page and on the Knowledge Hub & Resource Centre, and their recordings will be available on the European Youth Cancer Survivors Network YouTube channel,
- all channels of the Platform (YouTube, Facebook, Twitter, Instagram, LinkedIn accounts and Knowledge Hub & Resource centre) will also include at least 10 educational videos for content created within WPs 3 – 5,
- the European Youth Cancer Survivors Network Instagram, Twitter, LinkedIn and Facebook page will post practical recommendations to CAYA survivors on a regular basis and will direct a targeted audience to the Platform,
- public Network events will also be promoted via the Facebook page, Instagram, LinkedIn and Twitter.
3.4 Advocacy Training
A mapping of existing advocacy training courses and initiatives is on-going and a summary list will be presented at the M13 General Assembly meeting. Together with the Survivor Core Group, the content of the training will be reviewed based on the descriptions of the programmes to assess whether relevant advocacy content is missing that should be covered at (or adapted for) the EU-CAYAS-NET Ambassador event in M15.
3.5 Evaluation & Monitoring
A Google Form has been created to track communication, dissemination and training metrics for the EU4H periodic reports. All beneficiaries are asked to fill in the form on a regular basis according to their communication and dissemination activities. All entries will feed into the Communication & Dissemination registry.
In addition, social media activities will be tracked periodically using the #EUCAYASNET, metrics of this tracking will likewise feed into the registry.
Furthermore, certain metrics for respective activities have been defined by WP6 in order to monitor the success of the project's communication and dissemination activities (Table 3).
Table 3 Communication and Dissemination Metrics
| Activity | Target/stakeholder group | Rationale |
|---|---|---|
| Platform, with social media & peer support | Survivors, healthcare professionals, policymakers, general public, media (5,000 visitors/month from at least 27 countries by M18; 1,000 peer support sessions by M18) | Engaging platform (with automatic translations integration to all EU official languages), social media channels reaching youth audiences, meeting identified need for peer support |
| 2-day Networking Event | Survivors from 27 EU Member States, at least 30 survivors from non-EU countries, Stakeholder Core group, general public, media (130 participants in event) | Existing events with high interest for youth, successful approach used previously by Youth Cancer Europe, opportunity to reach survivors not active in organisations (broaden representation) |
| 3 National Policy Events | Survivors, healthcare professionals, policymakers, media (at least 30 participants/event), 3 events: in Lithuania, in Austria, in Spain | Targeted events to support actioning of project results to promote and support health survivorship |
| 3 Regional Events | Survivors, healthcare professionals, policymakers (3 events with 50 participants/event) | Partially existing events with high interest for youth who are not fluent in English but keen to strengthen community (Balkan countries), opportunity to present the Network & Initiatives to broaden community and engage with more people |
| 4-days Closing Event during major music festival Event in Romania | Survivors from 27 EU Member States, Stakeholder Core group, general public, media (at least 170 participants in event) | Existing events with high interest for youth, successful approach used previously by Youth Cancer Europe, opportunity to reach survivors not active in organisations (broaden representation) |
3.6 Guide for the partners on how to communicate the project
All partners have received the guide on how to communicate about the project (Annex I). It indicates how to present the project on their website, as well as how to communicate about it on social media, which hashtag should be used for internal reporting. All partners have links to the project Platform on their websites.
3.7 Sustainability Plan
A Sustainability Plan, including a report evaluating the achievements of the project and detailing resources, will be developed and launched at the end of the project. The Plan will lay out on how to sustain the network and Platform. It will include a plan to obtain and secure the required resources, as well as strategies to meet non-financial requirements.
WP6 is responsible for the creation of the Sustainability Plan.
4. Impact and conclusion
The EU-CAYAS-NET Communication and Dissemination Plan will ensure that the visibility of the project's objectives and results is appropriately maximised across both online and offline media streams. Periodical review of the Plan will ensure relevancy of the information in the future. The Sustainability Strategy (D6.3), delivered at the end of the project, will make sure that the materials developed throughout the project are accessible and useful beyond the end of the project itself.
5. Annexes
5.1 Annex 1 - Guide for beneficiaries and APs on how to communicate about the project
To maximise the impact of the project, we ask all beneficiaries and APs to communicate about EU-CAYAS-NET on their social media platforms and websites. Before the launch of the Platform and social media channels, beneficiaries and APs will receive a branding user manual with guidance on how to use the project's visual identity and messages.
5.1.1 Funding Acknowledgement
As per Article 17 of the Grant Agreement, all communication and dissemination materials are required to acknowledge EU funding and include the following (or translations to local languages, where appropriate):
Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.
The EU emblem must remain distinct and separate and cannot be modified by adding other visual marks, brands or text. Apart from the emblem, no other visual identity or logo may be used to highlight the EU support.
When displayed in association with other logos (e.g. of beneficiaries or sponsors), the emblem must be displayed at least as prominently and visibly as the other logos.
Furthermore, before engaging in a communication or dissemination activity expected to have a major media impact, beneficiaries should inform the Coordinator, who will in turn inform the granting authority.
5.1.2 Social media
Social media postings should comply with the project's Communication and Dissemination Plan and take into account the following guidelines:
- You can share photos that WP6 provides you with, but in case you are sharing your own photos, for example taken at events, please ensure that people included consent to photos of them being shared online.
- You are invited (and encouraged) to share content directly from EU-CAYAS-NET's social media platforms on the platforms of your organisations.
- Communication about the project should comply with the project's objectives.
- For internal tracking purposes, always use the hashtag #EUCAYASNET for tracking purposes, #EUCancerPlan, to support visibility of our activities, as well as #beatcancer (for Twitter, if the characters are too many, you can post it in the comments).
- Content is discoverable by others through keywords as well, so make sure to use the full platform's name where possible in the descriptions of posts.
- When possible, respective partners should be tagged in postings when you are sharing general information about the project. This will show unity and will ease for the other to directly reshare your content. Please use the handles below (Table 4).
In case there is a change in someone's domain, please contact office@ccieurope.eu
Table 4 Social Media Tags of Beneficiaries
| Partner | ||||
|---|---|---|---|---|
| CCI Europe | @cci_europe | @cci.europe | @EuropeCCI | Childhood Cancer International - Europe |
| YCE | @CancerEurope | @youthcancereurope | @YouthCancerEurope | Youth Cancer Europe |
| SJD | @SJDbarcelona_es | @sjdhospitalbarcelona | @SJDHospitalBarcelona | Barcelona Children's Hospital Sant Joan de Déu |
| PMC | @prinsesmaximac | @prinsesmaximacentrum | @PrinsesMaximaCentrum | Prinses Máxima Centrum voor kinderoncologie |
| SIOPE | @SIOPEurope | @siopeurope | @SIOP Europe | SIOP Europe, the European Society for Paediatric Oncology (SIOPE) |
| MedUni | @MedUni_Wien | @meduniwien | @MedizinischeUniversitaetWien | Medical University of Vienna |
| Pintail Limited | @PintailLimited | / | Pintail EU | Pintail Limited |
| PanCare | @PanCareNetwork | @pancare.eu | @PanCare | PanCare |
| POLA | / | / | @POLAasociacija | / |
5.1.3 Your Website
In order to spread the word about the project, please include a project summary on your website, as follows (including the project logo):
The EU-funded project "EU-CAYAS-NET" will develop a "European Youth Cancer Survivors Network" alongside an interactive virtual platform. The network will foster social networking, peer-support, knowledge-exchange, and aims at improving:
- the quality of life of survivors (including mental health, education & career support, follow-up care and transition),
- the care for adolescents and young adults (AYA) with cancer, and
- Equality, Diversity and Inclusion (EDI) along the whole treatment and survivorship trajectory.
The activities of the project include peer visits, meetings, training, virtual coworking, social media campaigns, webinars, policy recommendations and national and international events.
[Your organisation name] will ensure … [input your role]
Website: www.beatcancer.eu
Duration: Sept 2022 – Aug 2024
Funding and disclaimer
Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.
Denne publikation er en del af EU-CAYAS-NET – EU Network of Youth Cancer Survivors.
