How “Lemons” can help recruit people for patient registries

The exact number of people living with metastatic breast cancer (MBC) is currently unknown. In-depth statistics of people living with the disease are missing and data is limited on the number of informal carers who provide daily support to breast cancer patients. The lack of data and evidence has made understanding the burden of the disease and advocating for solutions difficult.

To address this issue, The European Commission’s Joint Research Centre should develop clear guidelines on how to include metastatic disease in cancer registries via the European Network of Cancer Registries (ENCR). At National level, it is important for the authorities to consult all  stakeholders, including patient advocates, informal carers and patients, in the development of national cancer plans that encourage the creation of patient registries.

Katherine Crawford-Gray, CEO Worldwide Breast Cancer, interviews Ebru Tontas, co-founder and board member of Kanserle Dans, on the work this nonprofit organization carried out to increase awareness and promote a patient registry in Turkey:

 
  • Katherine:  Ebru, can you tell me about Kanserle Dans’ initiative with Turkey’s Ministry of Health Department of Cancer Control (DoCC) patient database?
  • Ebru: In 2014 we partnered with Rotary International to increase the number of women registered with the DoCC database to enable the Cancer Early Diagnosis Screening and Training Centers (KETEM) to reach more women and encourage prevention and early diagnosis. KETEMs are in every Turkish city.
  • Katherine: What challenges did you have to overcome to increase registration?
  • Ebru: Turkey is a conservative country with barriers to talking about breast cancer publicly, let alone asking women to join a registry. For example, women are superstitious about talking about breast cancer. Also, there are limitations to showing pictures of breasts even for educational purposes, so it’s hard to raise awareness and educate the public. Further to this, as we targeted lower socio-economic communities, we faced low literacy levels.
  • Katherine: How did the “Know Your Lemons” campaign helping you overcome these challenges?
  • Ebru: We had previously tried using simple brochures, but women would feel overwhelmed or embarrassed and would refuse to read them. The “Lemons” metaphor provided a pedagogic and fun approach, so it was the perfect way to attract women.
  • Katherine: Did the campaign make your job easier in getting women to sign up for the registry?
  • Ebru: The initiative took place in 12 cities on Turkey’s Aegean side where KETEM set up booths and screening vans at various locations like shopping malls, universities, city centers. Volunteers and staff all received training about breast self-examinations, screenings and signs of breast cancer with the “Lemon” campaign materials. Even with this public presence, we would not have attracted as many people if it weren’t for the campaign. Our volunteers told us that the “Lemons" helped explain the disease more clearly during training. It drew a lot of attention. Families would visit our booths to learn about breast cancer signs and symptoms. We shared more detailed educational materials with them, but nothing could replace the “Know your Lemons” visual aid.  When women looked at the picture, they engaged in the conversations and asked many questions.
  • Katherine: What was your success with the initiative?
  • Ebru: In over two and a half months we reached 40,000 people. Of these, 10,000 women were educated about breast self exam and over 2000+ enrolled in the registry. Also, four women we met during the campaign later reported that they had a mammogram after meeting us and were diagnosed with breast cancer. We met our goal of educating the public and encouraging earlier diagnosis.
  • Katherine: That is a fantastic result. Thank you Ebru and Dans Kanserle for helping change the picture of breast cancer in Turkey.

We encourage dialogue between the (M)BC community and EU policymakers to develop clear guidelines and promote national patient registries to capture and track breast cancer cases and to better understand the prevalence and burden of the disease, to ultimately advance towards a personalized care and improved outcomes for people suffering from this condition.
 
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