The side effects of treatment, the anxiety of awaiting exam results, feeling insecure about the future and social stigma can all lower metastatic breast cancer (MBC) patients’ quality of life. Prior to implementing their SPARC project, Kanserle Dans Dernegli surveyed over 100 MBC patients recorded in their patient database and asked them to identify the three key areas in which they needed support. The results of the survey indicated that these patients needed a dedicated platform where they could talk to other MBC patients, share advice on side effects and reciprocate psychological support. Based on these results, the organisation decided to create a virtual community for Turkish-speaking patients with MBC.
Kanserle Dans Dernegi’s mission is to raise awareness of cancer and early detection at a national level, provide cancer patients and their caregivers with information as well as provide medical and psychological support. They also seek to build bridges between physicians and patients and support national cancer control programme policy.
“SPARC was the fuel we needed to get going. We had the vision, ideas, manpower, dedication and desire. Being recognised as a SPARC awardee – amongst the 20 international organisations – helped us receive support from the medical community and subject matter experts in the field.”
In 2015, Kanserle Dans Dernegi was awarded a SPARC MBC Challenge grant alongside 20 other organisations across the world. With their grant, they have designed a website, a mobile phone application as well as dedicated social media pages to enable Turkish MBC patients to interact with each other and access accurate information and support.
They created a smartphone application available on Android and iPhone called "Met Meme”, a dedicated website as well as a Facebook group for Turkish-speaking MBC patients. Their target audience for this project was underserved communities with low health literacy rates who are most in need of this kind of informed and supportive community.
To ensure the website is kept up to date with content, and to manage the Facebook group discussions, Kanserle Dans Dernegi trained four volunteer administrators and two volunteer psycho-oncologists, who also acted as patient navigators.
Additionally, Kanserle Dans Dernegi published a webinar series, which has also been converted into a series of podcasts, that features patient stories and covers a wide range of MBC related topics such as treatment options, caregiving, eligibility for disability, physical/occupational therapy, sexuality, end of life issues and palliative care.
"Met Meme", the smartphone application, was launched in Turkish and English in 2016, and has received excellent feedback. Four years after, the app is still in use and is in its seventh version. The application and website offer quality content including dozens of articles and videos.
The Facebook group is called “Metastatik Meme Kanseri (Evre 4) ve Lokal İleri Meme Kanseri (Evre 3)” [Metastatic Breast Cancer (Stage 4) and Local Advanced Breast Cancer (Stage 3)] and has 1,092 members as of February 2020. Additionally, over 50 of webinars were conducted over the year of the SPARC project implementation (2015-2016).
Kanserle Dans Dernegi expressed hopes to translate this module to other cancers such as gynaecologic cancers.
Organisation’s website: Kanserle Dans Dernegi website
Website on MBC: Met Meme (in Turkish)
Smartphone app: MBC smartphone app (android)
Social media: MBC Facebook Group (in Turkish)
Webinars: Examples of webinars (in Turkish)
Video: Videos on MBC (in Turkish)
(Information from the project description and context is compiled from the SPARC reports)