Altron Karabina enables NGO to create SA’s first patient-led cancer registry
When Belinda Wagner, marketing consultant and life coach, was diagnosed with a rare cancer in 2016 called Angiosarcoma, she looked for information about cancer and support groups to help her navigate the immense challenges that lay ahead.
“When I searched for information online, one of the sites I found was the South African National Cancer Registry. Although this was a valuable resource, my cancer was not listed at the time,” she explained. “I also quickly realised that there weren’t any active support groups for people living with my condition based in my area, and neither were there any local networks that I could tap into for more information about Angiosarcoma.”
After receiving medical treatment in 2017, Wagner resolved to build a support group and community platform that would enable people living with cancer to share their experiences and empower each other along the way. She started a support group on WhatsApp, which immediately provided a resource for cancer warriors living with cancer to share their experiences, ask each other questions and engage with others experiencing similar emotions and challenges.
“I understood the loneliness and isolation that living with cancer can create, and my goal was to make sure that others felt supported and part of a responsive and caring community,” Wagner said.
Bringing the vision to life
While growing this supportive community, Wagner decided to launch an NGO which was required to drive the work that needed to be done. One of her visions was that the NGO, Living with Cancer, would oversee the first-ever South African patient-led cancer registry and that this would capture and track the journeys of people living with different types and stages of cancer.
“My next step was to approach various stakeholders within the medical sphere including the Cancer Alliance and the National Cancer Registry,” said Wagner, noting that the response was both immediate and hugely supportive from both entities.
“It is essential that cancer patients take up a central role in reporting their experience of cancer diagnosis and care in South Africa. Currently, the National Cancer Registry (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 South Africa through the incorporation of patient-reported data into our incidence analysis,” said Dr Elvira Singh: Head: National Cancer Registry: National Health Laboratory Service.
To develop the digital elements and platforms that would drive the concept, Wagner was later introduced by the Microsoft South Africa Philanthropies Lead, to Collin Govender, the MD of Altron Karabina, a leading digital transformation company and Microsoft Gold Partner.
“We aspire to be an inspirational business partner and a company that drives change in the communities we work in. Unfortunately, many people have had personal experiences with cancer, either themselves, or through colleagues, friends, or family,” said Govender. “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 – using Microsoft Azure, asp.net and a Cosmos database – people are now able to access a user-friendly site that is accessible via mobile, tablet or desktop devices.
“We are delighted to be an integral part of the remarkable Living with Cancer journey, and we will continue to provide the technology support that will bring this powerful resource to a wider community in South Africa,” added Govender. “Our Altron values talk to being passionate about our customers, partners, employees and the communities we work in and as a group, we have chosen three areas where we can make a visible societal impact – one of these being healthcare management.”
Tracking Data for Long-term Impact
Testament to the passion and commitment of each stakeholder, the Living with Cancer website is now 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 beautifully designed and 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 have been very intentional and deliberate with the language and questions presented on the site, working with a psychologist and other professionals to ensure the user journey is supportive, accessible and positive in every aspect,” added Wagner.
Importantly, the website not only tracks and captures individual journeys, but it acts as a central hub of resources and information (including access to Wagner’s Podcast). The website also provides multiple ways in which people can connect and become part of the Living With Cancer support group.
The value of data in saving lives
“The implementation of a patient-led registry is a very exciting project to the Cancer Alliance, and we feel that this project will allow cancer patients to speak up about their cancer – and allow them to be part of the solution,” said 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 added that they need statistics to ‘change the reality’ of cancer services in South Africa because if they do not have statistics, they cannot know how big the cancer problem is and therefore cannot plan properly.
“It is with this in mind that we ask all kinds of patients to stand up, speak up, be counted and to be part of the solution,” Greef said. “The fact that Dr. Singh from the National Cancer registry is willing to use the data from the Living with Cancer patient registry to enhance the current cancer registry 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 South Africa in the long run. This is phenomenal news for all stakeholders, and for South Africa at large.”
Wagner stressed: “If we can collaborate and unite as a community, then we can really make a difference, as I truly believe in the importance of community support during a lifelong cancer journey.