I have collaborated with the county council in Uppsala since 2003 as a part of the project course IT in Society. In this course I collaborate with my husband Mats Daniels who does research on learning environments for developing professional competencies related to IT systems development. The course is based on the teaching strategy of Open Ended Group Projects. Through this course we worked on the topic “Medical Records Online for Patients” a couple of three times between 2003 and 2011. The students did thorough research as a part of their course, and they also wrote one of the white papers that the county council sent to Brussels to get funding for the SUSTAINS project.

Around 2012/ 2012 the large EU project named SUSTAINS started and was coordinated by the county council in Uppsala. Mats Daniels and I were contacted by the project managers Benny Eklund and Leif Lyttkens (with whom we collaborated in the IT in Society course) who asked if we wanted to start a research project and do research on the implementation and consequences of putting medical records online in Uppsala county.

The SUSTAINS project had a meeting in Uppsala around new years eve in 2011/2012 and my husband and I set up a brief document describing the major ideas behind a research project and you still find these ideas in DOME today. These idead were presented at the meeting to see if there were other researchers interested:

• Three work packages:
  • 1) patients & relatives
  • 2) health care professionals
  • 3) systems development and implementation
• Multidisciplinary research
• Studies on the effects of the implementation from different perspectives using both qualitative and quantitative research methods.

My main research areas are IT and work, and how we develop and implement IT for work. However, in DOME I have not only done this but also research looking at the implementation from the patient perspective.

After this initial meeting we organised a few start up meetings in Uppsala for researchers that would be interested in this work. We got help from the EU coordinators at the university to find people, and somehow the words spread and we became a group of around ten people very quickly. I had never met most of these researchers, but we had very open and creative discussions.

During the first years the DOME project had funding from VINNOVA, and the last few years it has changed into a research consortium that consists of  researchers with funding from different sources. This fall we have funding from AFA through the EPSA project, Forte through the DISA project as well as strategic research funding through Örebro University and Uppsala University. This spring there will also be some funding from NordForsk through a new centre for gender research, and from Forte through the PACESS project.

The number of active researchers in DOME has varied over the years, but we are around 12-15 people that participate in meetings and do studies on medical records online. We come from six different universities, and we meet using Skype every three weeks and have a conference every semester at one of the universities. The next DOME conference is organised in Skövde in March 2017. DOME has a small group of leaders, and I am the coordinator of the consortium.

DOME is an open consortium and the only criteria for joining us is that you want to do research in the area of medical records online for patients, and that you spend time with us in DOME.  You can come from any area of research, and any university. 🙂