About the project
RareICT combines several wikis with semantic tagging and meta-data in a secure environment for patient-provider communication, MinJournal. Different stakeholders: persons diagnosed with a rare diagnosis; parents and family members; and health care providers (nurses, social workers, doctors) are offered a dynamic virtual environment to accumulate, exchange, develop and discuss contributed information, experiences and knowledge in a secure setting.
Objectives
The purpose of this project is to develop a secure web-based environment as a learning resource that explores, systematizes and exchanges information and knowledge of “living well” with a rare diagnosis. In particular, the focus is towards everyday experiences and challenges, self-care and independence, peer-support and new modes of collaboration with the health care system.
Theory and methods
The arena is based on participatory design with a series of workshops with patients and their relatives as well as health professionals. We have used agile development methodology to explored the field, and design RareICT.
Partners
The arena is developed in collaboration with
- Senter for sjeldne diagnoser, Rikshospitalet
- Institute of Health and Society
- InterMedia, Universitetet i Oslo,
- IT-avdelingen, Oslo Universitetssykehus HF, Rikshospitalet
Funding and timeframe
Medinova and the ICT department at the Oslo University Hospital HF, Rikshospitalet
Timeframe: 2008-2011
Outcomes
RareICT is a service integrated in the patient portal MinJournal.
We have published from the project:
- A book chapter, Sandaune & Tjora (eds.) "Digitale pasienter", Norwegian Anthology.
- Book chapter (forthcoming)
- Poster ChronICT
- Poster RareICT at pHealth 2009, Oslo
- Paper at MIE 2009, Sarajevo.