1. ”Doing action-research on online self-help groups – advantages and challenges” TTeC 12.06.06 marianne.trondsen@telemed.no anne-grete.sandaunet@telemed.no marianne.trondsen@telemed.no anne-grete.sandaunet@telemed.no

2. Background Need for research-based knowledge about e-health: both quantitative and qualitative research Growing demand for more practice- oriented forms of research

3. Action Research Focuses on enhancing learning processes to support an organisation’s or a community’s capacity to solve pertinent problems Emphasises the partnership between stakeholders and researcher The researcher is active in order to facilitate changing processes Framed by a reflexive research methodology

4. Aim of presentation Outline advantages and challenges by use of AR in assessments of internet based health services

5. Study examples Two explorations of the potential of online exchange of lay experiences Study I: breast cancer patients Study II: adolescents (15-18 years old) with mentally ill parents Establishment of two password- protected, anonymous SHGs, self- selected participants Involvement through moderator roles

6. Study I: breast cancer patients Collaboration between NCT and Norwegian Cancer Association 40 participants 1114 postings, 16 months study period

9. Study II: Adolescents with mentally ill parents Collaboration - NCT and The Child and Adolescents Psychiatric Clinic at the Hospital of Sørlandet, Norway A part of the website www.morild.org www.morild.org Started December 2005 - an ongoing study

13. The intervening role Moderation of the groups: Ensure that the communication in the groups corresponds to Norwegian legislation and the customs of the groups Awareness to group-processes Facilitating activity

14. Advantages Flexibility, immediate use of acquired experience Extend the possibilities for contextual knowledge

15. Challenges Ethical dilemmas Lack of non-verbal communication

16. Conclusions AR can contribute to effective knowledge production within explorations of e-health applications However, the physical distance combine with the area of research, require continuous assessment, sensitivity and a solid foundation of the project