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Background: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members.Objective: There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions.Methods: Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups.Results: The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors.Conclusions: Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.

Personal or individual budgets for purchasing health and social care are intended to offer more choice,\ud control and flexibility to service users when compared with agency-directed care. They are becoming an\ud increasingly common feature in high-income countries for purchasing personal care that often lies on the\ud border line between health and social care. In England, they have recently been introduced explicitly for the\ud purchasing of health care. There are some key motivations behind their introduction: they are expected to\ud give individuals more choice about care they receive; to expand options for care; to improve outcomes; and\ud to reduce expenditure. This paper draws from a review of the international evidence on personal budgets\ud which identified: descriptive detail on personal budget schemes in 11 OECD countries to examine their key\ud features and implementation processes; empirical evidence on the experiences of, and outcomes for, people\ud using these schemes, and; empirical evidence regarding the impact of the schemes on the healthcare system,\ud particularly with regards to resources. The paper examines the motivating factors behind personal budget\ud schemes in light of this evidence. It concludes that there is little in the evidence to suggest that international\ud governments’ expectations for personal budget programmes are well-founded. The assumptions that they\ud improve choice, and that more choice will in turn lead to greater autonomy and then improved outcomes at\ud lower cost, are actually far more complex and generally unsupported by evidence.

Overall AbstractIntroductionSurgical techniques used to perform native tissue pelvic organ prolapse (POP) repair vary between surgeons in the UK and other countries. There is a lack of evidence exploring whether this variation in practice influences the outcomes of surgery.ObjectiveTo evaluate how and why a cohort of UK surgeons use particular surgical techniques when performing native tissue POP surgery and whether this influences the outcome of surgery.MethodA mixed methods study. A questionnaire survey was conducted to detail current surgical techniques for native tissue and graft/mesh POP repairs performed by a cohort of UK surgeons recruiting to a large multicentre prolapse trial (PROSPECT).This informed qualitative research (video observations of surgery, audio taped interviews with surgeons and fieldwork) to categorise how surgeons operate and why surgeons use certain surgical techniques when performing native tissue POP surgery. The influence of different aspects of the surgical technique on patient outcomes following native tissue anterior repair in women recruited to the PROSPECT trial were then investigated using the themes from the qualitative part of the study.ResultsSurgical techniques used to perform POP surgery vary between surgeons who recruited to the PROSPECT and VaST studies. The techniques used varied between surgeons in each step of the procedure and themes were derived from these steps rather than the procedure in its entirety. Categorisation of themes was challenging due to the subjective elements of surgery and the lack of standard terminology to describe techniques. Four themes were identified to explain why variation in surgical practice exists; The surgical journey; Rationalising practice; Contextual factors; And, Concepts of success. Although surgeons expressed a willingness to incorporate evidence based medicine into practice there was a reported lack of evidence on which to base practice. Certain aspects of technique (depth of dissection, method of repair, fascia suture material and skin suture method) were observed to influence the subjective and anatomical outcomes of surgery.ConclusionNative tissue anterior repair surgery has been categorised and the reasons for practice variation identified. Aspects of surgical technique were found to influence the outcomes of POP surgery. Standardisation of surgical terminology is required. These results should raise awareness of the influence of surgical technique on outcomes and should inform future RCT in this area to identify if a change in practice is required. Prolapse is a common condition in women and the symptom that women commonly describe is “the feeling of a lump or bulge at the entrance of or coming out of the vagina”. There are 3 compartments or walls of the vagina including the front (anterior), back (posterior) and top (vault or cervix). Prolapse can occur in any of these compartments.One of the treatments for prolapse is surgery. There are concerns about the success rate of the surgical repair of prolapse especially the front wall. There have been some studies that show the surgical techniques used to repair prolapse of the front and back walls vary between different surgeons but the findings have been limited by the quality of data and lack of clear definitions. This study looks in more detail at how the surgical techniques to repair the front and back walls of the vagina vary as well as the reasons behind these variations in surgical technique. It is not clear currently whether this surgical technique variation affects the outcome of surgery and the results of this study will be used to assist in answering this question.

The Internet is increasingly being used as a source of health advice and information by individuals with long term conditions (LTCs). Online forums allow people to interact with others with similar conditions, providing access to a form of social support that is based around the shared experiences of living with and managing an LTC. However, it is not clear how this support is integrated into people’s lives and their use of health services. To date, research in this area has predominately focused on single conditions, and while it has been suggested that Internet forums may be particularly beneficial for those with ‘contested’ LTCs, this has not been adequately explored. This study aims to address this gap by exploring how individuals with contested and uncontested LTCs utilise Internet forums.This study used qualitative methods, and semi-structured interviews were conducted with 20 participants with ME/CFS and 21 participants with type 1 and 2 diabetes. These conditions were considered to provide an appropriate context in which to explore the use of the Internet and Internet forums for contested and uncontested LTCs. Participants were recruited via a number of online and offline routes, including discussion boards, email lists, newsletters, and face-to-face support groups. Interviews transcripts were analysed using thematic analysis.The results focused on three overlapping themes that were identified during the analysis; namely (1) the process of developing and maintaining trust on forums, (2) accessing support and empowerment online, and (3) forum users’ presentations of self online. The use of online discussion groups was a complex and nuanced process, and was influenced by a number of individual and illness specific factors. Developing relationships with trusted forum members enabled individuals to give and receive support online, and provided a tool of empowerment. While access to peer support and the lived experiences of others were valued by interviewees, forums also allowed participants to access both experiential and scientific knowledge online, providing both lay and expert perspectives around LTCs. In addition, interviewees were seen to carefully manage how they presented themselves on forums, selecting the information that they shared about themselves in order to develop and maintain a particular online persona.By drawing on the advice, information, and support shared online, participants were empowered to position themselves as active participants in their own healthcare and to further engage with healthcare professionals. The findings indicate that forums can play a valuable role in aiding and motivating individuals in the daily management of LTCs, and highlight how this support is used to complement formal health services.