RareICT (completed)

Emerging technologies offer new opportunities to elicit, share and communicate strategies to deal with everyday challenges of living well with rare health conditions. The starting point in this project was to offer an environment for co-evolving, relevant information that can assist in health related decision-making at home.  The content will be developed through participative and interactive website methods. The software environment, RareICT, is to help patients living with chronic conditions and family members in their everyday work. This project continues on the work we did in the ChronICT project.

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.


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.


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


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.


Published Nov. 12, 2010 9:29 AM - Last modified June 1, 2012 4:50 PM


Project leader:

Sissel Jor, OUS and Anne Moen


Detailed list of participants