Network Platform

About this deliverable

Version history

Consortium

1. Executive Summary

D2.1 'Network Platform' explains the importance of the Network Platform as the catalyst for all the project activities and pre-requisite for numerous project tasks. The Network Platform is the face and the voice of the project – reflecting the needs, preferences and tone of the young cancer survivors – the driving force of the project. The report explains how survivorship organisations involved in the Network have come up with the concept, design and architecture for the Network Platform, as well as how it was created and tested. An overview of main features of the Network Platform is provided in graphic snapshots and explains the expected impact of the Network Platform and it's relation with other tasks within the project, explaining why it is a central deliverable of the project.

2. Introduction & Background

The Network Platform is the catalyst for all the project activities, acting as the knowledge-hub and the resource centre for initiatives and best practices related to project tasks, as well as providing a co-working space for project team, affiliated organisations and youth cancer survivors, their families, healthcare professionals and policymakers. The launch of the publicly accessible Network Platform enables the start of numerous additional tasks of the project (for detailed info refer to Section 5). The Network Platform will play a central role in improving social networking and the links between young cancer survivors, caregivers, healthcare professionals and policymakers who are interested in the topics of Survivorship, Quality of Life, Adolescent and Young Adult Care, Equality Diversity and Inclusion.

Numerous tasks of the project will lead directly to the Network Platform and will either be used to provide content for the Network Platform or will help to generate content, collect feedback, facilitate discussions and analyse the metrics of audience engagement.

Impact and the uptake of the Network Platform will largely determine the success of the overall project as it is the face and the voice of the project – reflecting the needs, preferences and voices of the young cancer survivors – who are the driving force of the project.

3. Approach

As a first step, POLA drafted a technical specification for creating the Network Platform and approached several potential service providers.

In M1, a series of meetings was held with potential service providers aimed at identifying and assessing the feasibility and deployment of the state-of-the-art technological solution for hosting multilingual, content heavy and reactive platform, accessible via mobile and stationary devices. After consultation with CCI Europe and YCE, Mediapark (https://mediapark.com/) was selected as the service provider for creating the network platform by POLA. The agreed timelines for developing the Platform have been met, with a launch achieved in early Dec 2022 (M4).

The external services that were provided during M2 and M3 to develop the Platform included:

1. user experience guidance on vision and strategy of the Platform,
2. information architecture,
3. wireframes design,
4. project adjustments,
5. design works on:
   • 5.1. concept design (home page, about us, events, search),
   • 5.2. concept adjustment,
   • 5.3. design adaptation to remaining pages (resources, articles, community, privacy policy),
   • 5.4. additional elements (404 page, OG image, cookies pop-up),
   • 5.5. design systems, hovers, forms, RTE, and
   • 5.6. creation or responsive design and design adaptation adjustments.

The external services that were provided during M4 included the coding, responsive programming, and testing of Platform features across different platforms.

In M2, CCI Europe selected an external service provider (Karma Agency, https://karma.agency/) to create a social media strategy for the Platform. CCI Europe, together with the Karma Agency, co-organised a workshop on 24 Nov 2022 (M3) with project beneficiaries and Associated Partners to collect input for the social media strategy. The social media strategy will contribute to populating the Platform with the content and will be reflected in D2.2 'Social Media Metrics'.

Mediapark presented several alternative design options for the Knowledge Hub & Resource Centre, that were discussed by the project beneficiaries during the focus group meeting held by CCI Europe and Karma on 24 Nov 2022 (including representatives from YCE, CCI Europe, SIOP Europe, PanCare, PMC, HSJD, MUV and Associated Partners). During the meeting, the proposed design and architecture options were reviewed, focus group members provided their feedback and the final design option was selected.

POLA has coordinated the implementation of visuals, design and coding features with the external service provider on a daily basis. POLA has also purchased additional software licences for co-working space (e.g. WidgetBot for discord integration into online portal, Discord nitro for the video-conference facility, miro for brainstorming and project meeting sessions). In addition, POLA has purchased the domains of beatcancer.eu, youthcancersurvivors.eu and youthcancersurvivors.com and the hosting services for the duration of the project. POLA has created privacy policy, terms and conditions and cookies policy for the Network Platform and ensured their compliance with GDPR. The Platform was created with an intent to minimise the collection of any personal data and prioritised solutions that allow for opt-in anonymisation wherever possible.

YCE has monitored the implementation of selected design and visuals. CCI Europe has validated the final product.

The Network Platform was developed throughout M1-M4 and was launched on 28 Dec 2022.

4. Results

The Network Platform is live and accessible via the following interchangeable links: https://beatcancer.eu/, https://youthcancersurvivors.eu/, https://youthcancersurvivors.com/.

Snapshots from the Network Platform at launch are displayed below. The Platform will be continually updated and maintained over the duration of the project.

Figure 1 Snapshots of landing page

• Header navigation: Resources, Events, Community, About us, Peer support, language selector (EN), search.
• Hero: "United we #beatcancer" – "This is a safe place to share, learn and grow. We welcome all cancer patients, survivors and their carers. Here all the opinions matter and your issues deserve to be addressed." Buttons: "I Want to Learn", "I Want to Share".
• Second banner: "European Network of Youth Cancer Survivors" over a group photograph of network participants.

Figure 2 Snapshot of map with information about beneficiaries and Associated Partners

• "Countries participating in EU-CAYAS-NET project – Click on a country on the map to see the description of every contributing organisation." Example shown for Romania: Asociatia Little People Romania and Youth Cancer Europe, each with a short description.

Figure 3 Snapshot of Contact Us page

• "Contact us – If you do not find what you are looking for, have questions or want to collaborate, send us a message below." Links to Facebook, Instagram, YouTube; form fields Name, Email, Message; consent checkbox for privacy policy, terms and conditions, cookies policy; "Send" button.

Figure 4 Snapshot of newsletter subscription page

• "Get to know us better – If you are reading this, you are in the right place – we do not care who you are and what you do, press the button and follow discussions live." Button: "Join our community".
• "Feel in the loop – subscribe and wait for our newsletters to enlighten your day." Email field, consent checkbox, "Subscribe" button.

Figure 5 Snapshot of links to social media accounts/social media feeds

• "Follow us on socials – Prepare to be impressed. Engage with us and share the work of young cancer survivors." Buttons: Facebook, Instagram; embedded Instagram post previews.

Figure 6 Snapshot of resources page

• Search for "youth cancer" returning Resources: 8, including "The 'Right to be Forgotten' Addressed in the European Parliament for the First Time" (7th November 2018; Policy, Video) and "White Paper on the Needs of Young People Living with Cancer" (8th December 2018; Policy, Report).

The Network Platform currently consists of:

1. A public resource centre with content that will be added to on a continuous basis over the project: /resources/

   Figure 7 Snapshot of resources page

   • Search resources with filters: Topic, Cancer type, Resource type, Year, Sort by. Example entries: "Report on Strengthening Europe in the Fight Against Cancer – Towards a Comprehensive and Coordinated Strategy" (2nd February 2022; Policy, Publication) and "A Europe for Children & Adolescents with Cancer: Position paper of the European paediatric cancer community" (1st March 2022; Policy, Report).

2. a virtual co-working and meeting space, with public areas and internal project co-working areas: /community/

   Figure 8 Snapshot of co-working and meeting space

   • "Community – Interactive hub, where you can get the answers you are looking for, bond with your peers, and forge collaborations while having fun." Embedded beatcancer Discord widget with channels (introductions, new-user-roles, welcome-and-rules, announcements, general, off-topic, memes, resources, general-help-channel, topics) and a login prompt.

3. an embedded video-conference facility (accessible via dedicated Discord channels)

   Figure 9 Snapshot of video-conference facility

   • Discord voice channel with "Watch Together" stream of a Youth Cancer Europe video.

4. a surveying feature, customisable via a portal admin panel,

   Figure 10 Snapshot of surveying feature

   • Mobile view of beatcancer.eu with the banner "We do appreciate your time and input" and buttons "Take the survey" / "No, thanks" above the landing page.

5. social media accounts (Facebook, @youthcancersurvivors (https://www.facebook.com/YouthCancerEurope; Instagram, @youthcancersurvivors, link: https://www.instagram.com/youthcancersurvivors/; Youtube channel @youthcancersurvivors, https://www.youtube.com/@youthcancersurvivors) [1].

   Figure 11 Snapshot of social media channels

   • Instagram profile @youthcancersurvivors (8 posts, 28 followers) and the "Youth Cancer Survivors" Facebook page with photo posts from network meetings.

The Network Platform is available in English (with embedded automatic translations in 24 EU official languages). 8 of the languages have been written / translated by native speaking professionals, namely: English, French, Spanish, Italian, German, Dutch, Bosnian-Serbo-Croatian and Lithuanian.

Figure 12 Snapshot of landing page translation

• French landing page ("Unis nous #beatcancer") with the language menu (EN, ES, FR, DE, NL, BCS, LT, Custom) and the automatic-translation language list.

Integration with a peer-support app (task 2.6.) is scheduled to launch by M16.

Figure 13 Snapshot of Peer Support App information page

• "The Alike app – A game-changing peer support platform. Living with cancer can be lonely. Speaking to others who have been there, done that, and worn the unflattering hospital gown makes all the difference. That's what the Alike app is for. It's a place to share, connect, vent or show off (if that's your thing). Whatever you need to do, whenever you need to do it, we're here. So jump in." Download on the App Store / Get it on Google Play.

5. Impact & Conclusion

This report describes the actions that were taken by the project beneficiaries in creating the Network Platform and provides the snapshot of the available features. The Network Platform is a central deliverable of the project and is a prerequisite to commence other numerous tasks within the project. Launch of the Network Platform enables the network participants to share challenges, best practice and knowledge with each other through social networking and virtual co-working facilitated by a multilingual platform with an embedded video-conference facility to support virtual events. The Network Platform is created by young cancer survivors and is first tailoring their needs; however, it also invites participation of the families of the survivors, healthcare professionals and policymakers (who are also part of the project consortium and / or are involved in various tasks).

The "Contact Us" form will also allow to forge new links with young cancer survivors, their families or healthcare professionals throughout the duration of the project.

The features of the Network Platform separately, as well as jointly, provide a forum where the voice of the survivor leads the conversation about what is needed for healthy survivorship.

The "Resources" section of the Network Platform is freely accessible and is continuously populated with comprehensive content on existing knowledge and best practice for issues related to survivorship. An on-going collection or relevant resources will include relevant EU initiatives, including initiatives of Europe's Beating Cancer Plan and will be uploaded and / or reference in the Network Platform.

The Network Platform will enable the hosting of a series of webinars, online events, brainstorming sessions, results of the discussion outcomes, policy papers and will be made publicly available and promoted to national and international cancer survivor organisations.

Later in the project, the Network Platform will include content from the thematic working packages (WP3 - WP5) and the engagement with the content will be tracked via analytics to measure impact on various metrics (related to D2.2).

Creation of the Network Platform marks the launch of numerous tasks, including:

• Task 2.4 Populate the Platform with content from WPs 3-5,
• Task 2.5 Identify and include existing resources on the Platform,
• Task 2.6 Integrate app for peer-support,
• Task 2.7 Adapting Platform content to social media accounts,
• Task 2.8 Organising, creating, disseminating webinars,
• Task 5.3 Online survey of participants from minority groups,
• Task 5.4 EDI practises Survey, and
• Task 6.4 Dissemination activities.

Notes

[1] In line with the project plan, videos will be available later via Tasks 2.4 and 2.5.

Funding and disclaimer

Co-funded by the European Union (Grant Agreement No. 101056918). Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or EU4Health. Neither the European Union nor the granting authority can be held responsible for them.