Why it matters for patients

Nowadays, social media is a strong fixture in everyday life, and a presence online has become a necessity as well as a very effective way for non-profit organisations to be visible and reach people. For us, it enables us to reach patients, carers, fellow organisations, pharmaceutical companies, healthcare professionals and decision-makers in our fight to get the patients voice heard and on the agenda in policy. For patients themselves, it can enhance their own capacity to continue their work in advocating for the best care and treatment. They not only have invaluable knowledge of their condition, but also have the right to be informed. It is another channel we can together use to reach our goals and benefit our work. Recognising this, the Cancer Advocacy Academy was established to enhance the reliability of information online for European patients and to encourage better use of social media channels to better serve the work of organisations and patients alike. Through this project, a Social Media Manual was developed to understand the key issues faced.

‘’In order to identify key issues faced by the Organisations participating in the Cancer Advocacy Academy project while portraying their activities in social media, a tailored online audit had been conducted with the aim to build a clear, comprehensive Communication Strategy, enhance the access to communications online tools, as well as increase the capacity of cancer patients to best use social media channels in a way that will further benefit their work.’’

How to make the most of this tool

In identifying the challenges when it comes to communications outreach, and in order to help others to make the most of the opportunities offered through social media, this manual was created to highlight the benefits of online tools and the issues that arise before exploring how to overcome them. Cancer knows no difference in age, gender or education level, and the same can be said for online platforms, leading the way for everyone to play a role in providing concrete, trustworthy information about cancer. With the guidance provided, organisations and patients can become more visible on social media, communicate their best practices, create awareness campaigns online and better support patients who are not always able to be there in person. The ‘Fight Bladder Cancer’ Campaign is one example of using social media to reach and impact further.

Through ‘blowing bubbles for bladder cancer’ and asking people to get involved by sharing their pictures online, the campaign was able to reach a larger audience of people. It opens up a world of new connections and provides a unique way for us to reach those who may not have access to crucial information that can shape their treatment and recovery journey. This resource is available for everyone and we hope that it can help our members make the most of the opportunities offered through social media. Please contact us with any questions you may have. We are here to help!

Downloads

Contact person

clemence.moriniere@ecpc.org

Produced with the support of

Organisations involved:

  • Cancer Patients’ Association of Slovenia – Slovenia
  • Borka – FYROM
  • Romanian Oncology Association ‘Saint Anna’ – Romania
  • Association PAVEL – Romania
  • National Association of Patients with Oncological Diseases (APOZ) – Bulgaria
  • Association of Cancer Patients of Athens ‘KEFI’ – Greece
  • Win Health Foundation – Poland
  • GEPAC – Spain