myCode – improving care with young adults with cancer in the innovation team

How can we improve care and life for teenagers and young adults with cancer? The answer to this question is being explored by the Young Cancer support association and Karolinska University Hospital through the joint innovation project myCode, supported by several organizations. The goal is to enhance quality of life and increase survival by sharpening the focus on young people under treatment – and on new technology to improve communication between patients and the healthcare system.

I find it extremely encouraging that the healthcare system is motivated to make a change," says Siri Kautsky, ome of the patient representatives in the innovation team.

The teen years can be a difficult period for anyone. This challenge becomes considerably more difficult for young people who must also cope with a cancer diagnosis and the emotional, aesthetic and health-related side effects that accompany its treatment.

We see a need to recognize teenagers and young adults (15-29 years) with cancer as a special group:

  • 50 percent report psychiatric and psychosocial problems, including post-traumatic stress syndrome, anxiety and depression.
  • The disease also impedes opportunities for education, employment and self-sufficiency.
  • Research also shows that survival is worse compared with children and adults with the same disease. In certain groups, the difference is as high as 30 percent. There is a link here between inadequate understanding of – and therefore adherence to – the treatment.

New technology and venues

"We would like the various needs of individuals to guide development in order to create a holistic view in which the patient is actively engaged," says Therese Sjöberg, who is head of the innovation project.

95% have already discussed their disease on social media.

"For example, how can we create attractive digital social environments for encounters, dialogue and support adapted to this target group, which is well-acquainted with social media – and where 95 percent have already talked about their disease on Facebook?"

Large group in need of a place to belong

Young people are one of the larger age groups, who currently lack an obvious place in the healthcare system and do not always feel at home in either the pediatric or the adult wards. Consequently, a preliminary study is underway to explore new innovative solutions to meet the specific needs of teenagers and young adults – regarding both access to care and the design of technological solutions.

The idea is to ultimately provide new venues for the encounter between health care and young patients – or between friends. The project will also explore whether virtual encounters, where patients in a similar situation meet one another, can be effective.

In Sweden, 800 teenagers and young adults (15-29 years) are diagnosed with cancer annually. Worldwide, the corresponding figure is 1.5 million new cases per year.