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Young Cancer Patients develop online-community, University Medical Centre facillitates

Radboud University Nijmegen Medical Centre (RUNMC) facilitates, young people with cancer to develop their own community.

Update 1 : Forrester Research wrote a great case study on this work of us : Case Study 
Update 2 : watch the TEDxMaastricht talk of Lucien Engelen at the end of this blogpost that is refering to AYA4 and it’s Ambasaador Jip Keyzer who sadly passed away on February 28th, 2012.
Update 3 :Forrester did another report where in the AYA4 community has been reported together with examples of  Aetna, Blue Shield of California, Regence, and The Cleveland Clinic

Radboud University Nijmegen Medical Centre starts with the development of AYA4 (All information You’ve Asked For) :  a unique online community for and by young people with cancer. The University hospital facilitates the technique, support and innovation, but it is the patients themselves who determine the content of the community and start filling. They create themselves a digital place where young people with cancer and their families can meet, exchange essential information, ask questions and share knowledge and feeling.

Youth and young adults with cancer (18 -35 years) often fall between two stools. They’re too old for child care and regular oncological oncological care often does not answer questions specifically with this group is, questions in the field of study, relationships, work, independent living and having children. 

 Internationally, the group called AYA: Adolescent and Young Adults.In this vein, the RUNMC in 2009 launched an AYA platform. Part of this platform in April 2009 opened a special hangout for young people with cancer and outpatient digital clinic AYA (autumn 2009). Among young people and their families show a great need for accessible in touch with peers and discuss key issues for them, besides the medical content items. Therefore facilitates RUNMC them to develop AYA4: an online community within the AYA platform. Prof. Winette van der Graaf, medical oncologist and initiator of the AYA platform: “In the strength of your life affected by a malignant disease has a major impact on the here and now, but also your future dreams. You will often be different in life, and your environment can not always go along. Oncology treatment team if we want to provide care extending beyond the hospital walls. Concern that also can be offered as the phase of active treatment is over.Therefore, we eagerly forward to AYA4, because we believe that AYA patients know best what they need and when. “

The aim is to provide people with the same kind of questions, problems and interests with each other to make contact within the community. In this context, the technical assistance of a big dating service is called in (by the Radboud REshape Healthcare Centre)  Not to create new relationships, but to use the technology people and interests together to match. In AYA4 each participant is to decide whether and on what subjects he / she wants to maintain contact with peers. This could be very practical things like food, insurance, money, but also personal issues such as fertility, relationships, death and life questions. Jip Keijzer (25 years and under treatment for bone cancer) is one of the patients also develop AYA4: “To me, AYA4 hopefully an opportunity to share my story in hopes that another aid or inspiration from it can get. I am glad that extra attention is given to cancer patients of my age.It is pleasant to others in the same age group to meet during my process of chemotherapy.Older people are often different to their cancer. “

Radboud reshape Healthcare
The development of AYA4 is in line with the vision of the Radboud University Centre for Oncology (RUCO), where the patient and his surroundings are part of the (treatment) team and is one of the spearheads of RUNMC to deliver innovative care in this case by the Radboud REshape Healthcare Centre. This team deals with the translation of Health 2.0 idea’s into real products of Participatory Healhcare. Lucien Engelen, Health 2.0 ambassador of RUNMC and in charge of this team: Within our vision of health 2.0 we would like the patient to be on our team, we want to develop innovative products with them, close to their contact information and knowledge needs. The patients themselves know better than anyone what is important to them, théy are the experts in háving the disease. If we are going to ask what they really want, we sometimes miss on 180 degrees in the wrong heading of what we thought. AYA4 is a wonderful example of the inclusion in the team.” Therefore it isn’t ús building a community, we facilitate a process and environment. The targetgroup itself is responsible for the content and we support them in all areas. We look with confidence and curiosity about the outcome. “

AYA4 will initially be developed by young people in treatment in the Radboud University Nijmegen Medical Centre. Besides patients, including parents, partners and other relatives participate in the community. They too have their own issues and needs surrounding contact the disease process or later. Striving for the community in the coming months full shape, and formally launched at a special conference this fall.



Lucien Engelen

5 replies

  1. This is a wonderful demonstration how a hospital can meet specific needs of a specific type of medical condition, age group etc. It provides fellowship and support among young people whose cancer affects them in very different ways than adults.

  2. I am curious to understand how the interfaces between patients and professionals are both strengthened/clarified/fortified and at the same time made more open/fluent/transparent by this. How are patients helped to live everyday life running fast and staying injury free? How are professionals inspired by this and what new knowledge presents itself? And not the least, how is the system getting more effective using this? I am sure it is.

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