myCode – improving care together with young adults with cancer

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 other stakeholders.

The goal is to enhance quality of life and increase survival by focusing on young people under treatment – and on new technology to improve communication between patients and the healthcare system.

The teen years can be a difficult period for anyone. This challenge becomes considerably more difficult for young people who at the same time mus 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 sense a lack of belonging in the healthcare system and do not always feel at home in either the pediatric or the adult wards. Therefor we are now exploring 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.

FILM. How to encounter young cancer patients

Teenagers and young adults with cancer often have different needs than children and senior patients. This is a fact resulting in not only a sense of not feeling at home at the ward, but also effects wellbeing and survival rates. An innovation project at Karolinska University Hospital healthcare aims at improving healthcare for this patient group – through a collaboration between patients, healthcare staff and a multitude of other stakeholders representing industry and society. The project is led by the Center for Innovation at the hospital and the cancer care wards in close collaboration with the patient organization Young Cancer.

myCode – joint innovation to improve cancer care for teenagers and young adults

The innovation project is exploring how healthcare can change and create new – maybe digital – venues, in order to facilitate for young patients to follow their treatment plan and get healthcare customized for their specific needs. The overall goal is to increase wellbeing and survival rates.

myCode stands for my solution to effect my life as a patient, according to my needs with technology supporting me

Parties now developing solutions within 4 focus areas: Karolinska University Hospital and Young Cancer (support organization) in collaboration with Regional Cancer Centers, GPCC Centre for Person-Centred Care at University of Gothenburg and industry partners: KPMG and CareChain. Financial support from from Vinnova. Collaboration also with other organizations, such as Swedish Public Employment Service, Swedish Social Insurance Agency and Swedish Association of Local Authorities.

Parties in previous study: Karolinska Universitety Hospital and Young Cancer (support organization) in collaboration with Childhood Cancer Foundation, Regional Cancer Centers, Swedish Association of Local Authorities and Regions and industry partners: Novartis, Tieto och Microsoft. Financial support from Region Stockholm Innovation, Childhood Cancer Foundation and Vinnova.