title: The anonymity paradox in patient engagement: reputation, risk and web-based public feedback.
abstract: The UK National Health Service (NHS) has long espoused patient and public engagement. Recent years have seen increasing use of internet-based methods of collecting feedback about patient experience and public and staff views about NHS services and priorities. Often hailed as a means of facilitating participative democratic patient engagement, these processes raise a number of complex issues. A key aspect of it is the opportunity for comment to be made anonymously. Our research reveals an anonymity paradox whereby patients clearly demonstrate a perception that anonymity is a prerequisite for effective use of these feedback processes, whereas professionals demonstrate a perception that patient anonymity is a barrier to effective use. The risks of anonymity are constructed very differently by patients and professionals. Patient concerns around anonymity were not motivated by a general concern about a loss of privacy, but more that a positive identification might compromise future care. For professionals, concerns were voiced more around risks of reputational damage for specific practitioners or practices (in that anyone could say anything) and also that this anonymous feedback was available publicly and that it might go against the medical opinion of the professional. These concerns pointed to important differences in perceptions of patient and professional vulnerability. In the qualitative analysis that follows the key finding was that while anonymity makes service users feel less vulnerable, it can have the opposite effect on managers and clinical staff. This raises important implications for the use and utility of internet-based methods of collecting patient feedback.
authors.affiliation: School of Health and Human Sciences, University of Essex, Colchester, UK.
authors.forename: Ewen
authors.initials: E
authors.lastname: Speed
authors.affiliation: School of Health and Human Sciences, University of Essex, Colchester, UK.
authors.forename: Charlie
authors.initials: C
authors.lastname: Davison
authors.affiliation: Independent Researcher, Theydon Bois, UK.
authors.forename: Caroline
authors.initials: C
authors.lastname: Gunnell
mesh_terms: D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003219:Confidentiality; D006801:Humans; D020407:Internet; D010358:Patient Participation; D018907:Privacy; D013222:State Medicine; D006113:United Kingdom