Young Lives vs Cancer partners with Ditto to help relieve emotional burden for parents repeating their child’s cancer updates multiple times per day

Ditto, a free app that turns recorded medical consultations into a clear written summary, is being rolled out to families affected by childhood cancer through a new partnership with Young Lives vs Cancer. Social workers at the UK charity will introduce the app to families at their first meeting after diagnosis, starting with centres in Edinburgh, Glasgow, Sheffield, Cambridge and Oxford.

Every day in the UK, 12 children and their families receive the life-changing news that they have been diagnosed with cancer. The programme eventually aims to reach all families affected by children with cancer in the UK, and will be available to those outside of the initial roll out locations.

Research shows that parents and patients struggle to recall up to 80% of the information communicated in consultations. Ditto has worked with Young Lives vs Cancer and their patient and parent voice board to rebuild the app so that the support it provides matches the challenges families face. Those discussions surfaced the scale of the communication burden carried by parents, who often field more than 25 check-in questions a day from grandparents, siblings and other carers about how their child is and the latest updates.

The app is free and available across the UK to any parent or patient who wants it, whether or not cancer is part of the picture, and the partnership connects families to it at the point they need it most.

After an appointment, the app also surfaces information from the Children & Young People’s Cancer Association when relevant. Families can keep the summary, understand it and send it on to whoever needs to know.

Rachel Kirby-Rider, Chief Executive at Young Lives vs Cancer, said: “We’re proud to be part of this partnership and to help make Ditto available to children and young people with cancer and their families. A cancer diagnosis can turn life upside down, and taking in complex information while managing the emotional and practical impact can be incredibly difficult. We’re grateful to the members of our Voice Board and Lived Experience Action Group, whose insight has helped shape the app. By giving families a clear record of conversations with healthcare professionals that they can return to and share, Ditto can help them understand what comes next and feel better supported as they navigate their cancer journey.”

Ambient voice technology is gaining popularity among clinicians and is increasingly used in consultations, but few patients have access to tools that support them in those consultations and across the rest of their care.

Patients and parents have the legal right to record their own consultations, and the large majority of cancer doctors are content for them to do so. In one study of oncology practice, 3 in 4 doctors said they were happy for patients to record and 4 in 5 doctors agreed when patients asked to record. The British Medical Association encourages doctors to support patients and families who wish to use recording in consultations.

Jeanette Hawkins and Jo Stark, CCLG Chief Nurses, said: “At CCLG, we are committed to ensuring that all children, young people, and their families feel informed, supported, and empowered throughout their cancer journey. The launch of the Ditto app is an additional support to help patients and families better understand the information discussed during appointments and providing a tool that translates complex medical terminology from consultations and medical letters) into clear, concise, and accessible language.”

Parents can co-own a child’s record on Ditto, adding to it and drawing from it independently of one another, which matters for separated households and for wider family who need to stay across what is happening.

Bart Voorn, co-founder of Ditto, said: “Every conversation we had with young patients and with families we met through Young Lives vs Cancer surfaced the same two challenges. You’re told the most important information of your life at the most stressful moment of your life, and then you’re asked to repeat it again and again: to the other parent, to grandparents, to whoever else asks. No parent should have to carry that on top of everything else. Ditto takes it off them: you record what was said, you get a clear summary in language you understand, and you can share it safely with whoever needs to know.”

Tim Sadler, whose young son went through three years of cancer treatment from the age of two, said: “If I was told something in the hospital and I needed to remember five things, I would remember three of them, and then the two really important things may have gone over  my head. Having one place where it’s all captured, that both parents can see, will make an enormous difference to families going through this.”

Sandra Vollrath, whose child was diagnosed with cancer eleven years ago, said “The overwhelm is almost instantaneous. The challenge is having all this information in my head, and then sharing it in different ways to different audiences. Ditto would have been amazing eleven years ago, so I’m really happy that Young Lives vs. Cancer are working on this.”

Helen Parrott, whose teenage daughter was diagnosed with cancer, said: “It comes from the most lovely place. But can you imagine how difficult that is to manage when you’re getting ‘how is she doing today?’ from sometimes 10, 15 people. You don’t want to let people down, and people genuinely care and want to know, but that’s such a huge burden on us as parents when we’re navigating so much in the thick of cancer treatment.”