Young adults with cancer developing healthcare

How can we improve care for teenagers and young adults with cancer? The answer to this question is being explored by the Young Cancer association and Karolinska University Hospital through the project myCode, supported by several other stakeholders.

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

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. Therefore, we are now exploring new innovative solutions to meet the specific needs of teenagers and young adults – regarding both the access to care, design of technological solutions and supportive programs.

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.

A new program taking a holistic approach

Since 2018, the project has explored the need of the patient group and started to develop solutions. Now, a person centric and age adequate program is taking form. Previously developed solutions are being integrated into the new program.

*Young adults who have experienced cancer are playing an important role as project team members. From the left: Isak Eliasson, Emi Bislimova, Trang-Anh Vu and Siri Kautsky.*

The innovation project is exploring how healthcare can change and facilitate for young patients to get healthcare customized for their specific needs. The overall goal is to increase wellbeing and survival rates.

The namne “myCode” stands for my solution to affect my life as a patient, according to my needs with technology supporting me.

Parties in ongoing and previous phases: Karolinska University Hospital and Young Cancer in collaboration with the blood cancer patient organization, Sahlgrenska University Hospital, Regional Cancer Centers, GPCC Centre for Person-Centred Care at University of Gothenburg, KPMG, CareChain, Novartis, Tieto and Microsoft. 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. Financial support from Region Stockholm Innovation, Childhood Cancer Foundation and Vinnova.