Count Me In – first Patient-Led Cancer Registry

We learn more about the first Patient-Led Cancer Registry, what it aims to achieve and the driving force behind it.

When Belinda Wagner was diagnosed with angiosarcoma, in 2016, she looked for information to help her navigate the challenges that lay ahead. “When I searched online, I found the South African National Cancer Registry (NCR). Although this was a valuable resource, angiosarcoma was not listed at the time,” she explains. 

After completing treatment in 2017, Belinda established a support group and launched an NGO, called Living with Cancer. One of her dreams was that the NGO would oversee the first-ever South African Patient-Led Cancer Registry that would capture and track people living with cancer and the different types and stages of cancer. 

Bringing the vision to life

“Thereafter, I approached Cancer Alliance, CANSA and NCR,” says Belinda. The response was both immediate and hugely supportive. 

Dr Elvira Singh, Head of National Cancer Registry says, “It’s essential that cancer patients take up a central role in reporting their experience of cancer diagnosis and care in SA. Currently, the NCR reports on the numbers of cancer patients diagnosed in laboratories and hospitals around the country. A Patient-Led Cancer Registry will be an invaluable partner in assisting the NCR to describe the burden of cancer in SA through the incorporation of patient-reported data into our incidence analysis.”

Building the platform

To develop the digital elements and platforms that would drive the concept, Belinda was introduced by the Microsoft South Africa Philanthropies team to Collin Govender, the MD of Altron Karabina, a leading digital transformation company and Microsoft Gold Partner.

Collin says, “To be able to assist with a project that could have national reach and bring people together for support, sharing of ideas and education, really struck a chord with us.”

Altron Karabina began the work of building the platform which includes a customised website and mobile app. Through technical expertise and a deep understanding of the digital landscape, people are now able to access a user-friendly site that is accessible via mobile, tablet or desktop devices.

Tracking data for long-term impact

The Living with Cancer website is live and provides a powerful community platform for people who have been diagnosed with any type of cancer, and who are in different stages of their cancer journey. The user-friendly site allows users to capture and track their journey by constantly updating information, such as diagnosis, date of diagnosis, stage, and well-being status.  

“We’ve been intentional and deliberate with the language and questions, working with a psychologist and other professionals to ensure the user journey is supportive, accessible and positive in every aspect,” Belinda adds.

The value of data in saving lives

“The implementation of the Patient-Led Registry is an exciting project to the Cancer Alliance, and we feel that this will allow cancer patients to speak up about their cancer, and be part of the solution,” says Linda Greef of the Cancer Alliance. “This is a great step in getting cancer services to become more equitable and available to most South Africans.”

She adds that they need statistics to ‘change the reality’ of cancer services in SA because if they don’t have statistics, they can’t know how big the cancer problem is and therefore cannot plan properly.

“We ask all kinds of patients to stand up, speak up, be counted and to be part of the solution,” Linda implores. “The fact that Dr Singh is willing to use the data from the Living with Cancer Patient Registry to enhance the current NCR is a big plus, and we commend the NCR for being so inclusive and open to support this innovative App. This means that the data that the LWC Patient-Led Cancer Registry collates will be added to the current National Cancer registry to look at cancer incidents and to improve planning for cancer services in SA in the long run. This is phenomenal news for all stakeholders, and for SA at large.”

We ask all kinds of patients to stand up, speak up, be counted and to be part of the solution. – Linda Greef