Background: Increasing numbers of people living with a long-term health condition are putting personal health information online, including on discussion boards. Many discussion boards contain material of potential use to researchers; however, it is unclear how this information can and should be used by researchers. To date there has been no evaluation of the views of those individuals sharing health information online regarding the use of their shared information for research purposes.
Objective: To explore the views of contributors to online diabetes discussion boards with regards to if (and how) they feel their contributions to boards should be used by health researchers.
Methods: A qualitative approach was employed using online semistructured asynchronous (email) interviews. Interpretative description methodology was used to assess the interview transcripts, and quotations were extracted and anonymized to support each theme.
Results: 26 interviews were carried out. Participants agreed that forum posts are in the public domain and that aggregated information could be freely used by researchers. This was agreed to be a good way of ensuring that the view of people living with diabetes is being heard in research. There was no consensus on the need for permission to use individual information, such as quotations, with some people happy for this to be freely used and others feeling that permission is necessary.
Conclusions: Participants acknowledged the dichotomy of having placed information into the public domain in an unrestricted way, with some interviewees also wanting to retain control of its use. The Internet is a new research location, and rather than trying to apply traditional ethical norms to this new genre, a new modus operandi is required. The authors propose introducing new norms for presenting research carried out with online discussion boards.
Keywords: health; research design; research ethics; social media.