The anonymity paradox in patient engagement: reputation, risk and web-based public feedback.

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.

Pathways to care: how superdiversity shapes the need for navigational assistance.

The recently developed sociological concept of superdiversity provides a potentially interesting and useful way of developing an understanding of life in contemporary Europe. Here we report on research based on individual narratives about access to health care, as described by a range of people from very different sociocultural backgrounds in four European countries. This article notes the frequent appearance in first-person narratives of the need for navigational assistance in the form of knowledge, cultural competence and orientation that facilitate the identification and use of pathways to health care. Our dataset of 24 semi-structured interviews suggests that, in the context of needing health care, the feeling of being a 'stranger in a strange land' is common in people from a wide range of backgrounds. In social settings characterised by transnationalism and cultural heterogeneity, it is important to understand the need for navigational assistance, particularly at times of uncertainty, in the design and delivery of health services. The relationship between the inhabitants of contemporary Europe and the healthcare systems available in the places where they live is dominated by both complexity and contingency - and this is the cultural field in which navigation operates.