BackgroundElectronic administrative data exist in several domains which, if linked, are potentially useful for research. However, benefits from data linkage should be considered alongside risks such as the threat to privacy. Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study. The Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. Qualitative research was incorporated in the PEARL study to examine participants’ views about data linkage and inform approaches to information sharing. This paper focusses on issues of consent.MethodsDigitally recorded interviews were conducted with 55 participants aged 17–19 years. Terms and processes relating to consent, anonymization and data linkage were explained to interviewees. Scenarios were used to prompt consideration of linking different sources of data, and whether consent should be requested. Interview recordings were fully transcribed. Thematic analysis was undertaken using the Framework approach.ResultsParticipant views on data linkage appeared to be most influenced by: considerations around the social sensitivity of the research question, and; the possibility of tangible health benefits in the public interest. Some participants appeared unsure about the effectiveness of anonymization, or did not always view effective anonymization as making consent unnecessary. This was related to notions of ownership of personal information and etiquette around asking permission for secondary use. Despite different consent procedures being explained, participants tended to equate consent with ‘opt-in’ consent through which participants are ‘asked’ if their data can be used for a specific study. Participants raising similar concerns came to differing conclusions about whether consent was needed. Views changed when presented with different scenarios, and were sometimes inconsistent.ConclusionsFindings from this study question the validity of ‘informed consent’ as a cornerstone of good governance, and the extent to which potential research participants understand different types of consent and what they are consenting, or not consenting, to. Pragmatic, imaginative and flexible approaches are needed if research using data linkage is to successfully realise its potential for public good without undermining public trust in the research process.

Acknowledgements:Thanks to Rona Campbell, Karen Throsby and two anonymous referees for comments on this paper. We would also like to thank those who participated in our research projects. AbstractDisability is as much a factor in interactional dynamics as ethnicity, age, gender or sexuality, and therefore its impact on the processes around qualitative research warrants much more systematic attention. Disabled researchers are not confined to disability studies research, although most accounts of the impact of disability on the research process have, thus far, been undertaken within this field. This paper moves beyond this narrow focus to consider the impact of disabled identities and the embodied experiences of impairment on studies involving, primarily, non-disabled people. By reflecting on our experiences as visibly disabled researchers, we highlight some of the practical, ethical and conceptual dilemmas we encountered. Impairments may assist rapport building with participants, but also introduce complex dilemmas concerning whether, when and how to disclose them, and the consequences of doing so. We highlight the centrality of the visibility of the disabled body in mediating these 2 dilemmas, and its part in constraining our responses to them. While we value our commitment to positive readings of disability, we demonstrate that disabled researchers nevertheless undertake research in contexts where disability is assigned meanings disabled people may not share. We argue that all researchers should attend to their own 'body signifiers' (whether in relation to ethnicity, wealth, gender, age etc.) and embodied experiences of research processes, as these are integral to research outcomes, the ethics of research, and are a means by which to address power differentials between researcher and participant. This paper addresses a gap in the literature, using our experiences of research to highlight the negotiations and dilemmas faced by visibly disabled researchers. Negotiations of identity prompted by the disabled body in the research process require consideration and should not be ignored.

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ObjectivesPrimary care records have traditionally served the needs and demands of clinicians rather than those of the patient. In England, general practices must promote and offer registered patients online access to their primary care record, and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients’ needs and expectations regarding online access to their record. This study explored what patients and carers want from online access to their electronic primary care health record, their experiences of using it, how they would like to interact with their record and what support they may need.DesignFocus groups and semistructured interviews using purposive sampling to achieve a good sociodemographic spread. Interviews were digitally audiorecorded, transcribed and coded using an established thematic approach.SettingFocus groups and interviews were conducted in community settings in the UK.ParticipantsFifty-four individuals who were either eligible for the National Health Service Health Check, living with more than one long-term condition or caring for someone else.ResultsParticipants views regarding online access were categorised into four main themes: awareness, capabilities, consequences and inevitability. Participants felt online access should be better promoted, and suggested a number of additional functions, such as better integration with other parts of the healthcare system. It was felt that online access could improve quality of care (eg, through increased transparency) but also have potential negative consequences (eg, by replacing face to face contact). A move towards more online records access was considered inevitable, but participants noted a need for additional support and training in using the online record, especially to ensure that health inequalities are not exacerbated.ConclusionsDiscussions with patients and carers about their views of accessing online records have provided useful insights into future directions and potential improvements for this service.

Publications reporting discrete choice experiments of healthcare interventions rarely discuss whether patient and public involvement (PPI) activities have been conducted. This paper presents examples from the existing literature and a detailed case study from the National Institute for Health Research-funded PATHWAY programme that comprehensively included PPI activities at multiple stages of preference research. Reflecting on these examples, as well as the wider PPI literature, we describe the different stages at which it is possible to effectively incorporate PPI across preference research, including the design, recruitment and dissemination of projects. Benefits of PPI activities include gaining practical insights from a wider perspective, which can positively impact experiment design as well as survey materials. Further benefits included advice around recruitment and reaching a greater audience with dissemination activities, amongst others. There are challenges associated with PPI activities; examples include time, cost and outlining expectations. Overall, although we acknowledge practical difficulties associated with PPI, this work highlights that it is possible for preference researchers to implement PPI across preference research. Further research systematically comparing methods related to PPI in preference research and their associated impact on the methods and results of studies would strengthen the literature.

The purpose of this study was to adapt and experimentally test the effectiveness of a research-based, employment-focused group counseling intervention (OPTIONS). OPTIONS was designed to increase male inmates' exploration and identification of employment interests and options, identification and development of employment-search skills, and knowledge of vocational options, goal planning, and identification and use of contextual supports. A randomized block design and measurements at pretest, posttest, and 1-month follow-up were used to examine the effects of OPTIONS. Participants included 77 (n = 38 treatment, n = 39 control) adult male inmates. Results indicated that OPTIONS participants had higher career search selfefficacy, problem solving, and hopefulness scores at posttest and follow-up than did treatment-as-usual control group participants.

In postwar England, the 'inner city' has loomed large in urban discourse and policy, serving as an important site through which 'race' has been rendered socially and spatially meaningful. Drawing on insights from history, geography and sociology, this paper traces the material and symbolic processes through which the 'inner city' has been the subject and object of socio-political knowledge and action. The article examines what shifting understandings of the 'inner city' and related policy responses reveal about the racialisation of space and bodies, and the role of the state in rationalising and enacting specific urban imaginings and interventions. In historicising dominant conceptions of the 'inner city', we identify three periods revealing key transformations within this formation: firstly, we consider how the idea operated as a spectre, in which the American 'ghetto' was seen as a predictor of 'race relations'; secondly, we contend that during the 1970s and 1980s, the 'inner city' came to be 'territorialised' as a pathological, racialised space subject to particular modes of institutional regulation; finally, we examine the relative fragmentation of the 'inner city' in recent decades, through urban regeneration and changes in the spatialisation of 'race' and ethnicity. KEYWORDSRace; space; 'inner city'; urban; policy 'Race', space and the 'inner city'The 'inner city' does not represent a singular, unambiguous set of issues; it is polymorphic, bringing together a range of concerns. Alongside notions of decline, crime, disorder, poverty and economic stagnation, 'race' has been the defining feature of the 'inner city' (Gilroy 1987;Keith 2005;Millington 2011). This is evident in how it is multiracial and multi-ethnic places such as Brixton, Moss Side, Toxteth and Handsworth that have represented archetypal 'inner city' areas. The 'inner city' has existed as a racialised space acting as shorthand for a range of socio-political contestations sutured by 'race', animating postwar political discourse and urban policy. It has provided a medium through which national 'crisis' has been articulated, and the presence of racialised 'others ' understood (Hall et al. [1978' understood (Hall et al. [ ] 2013Smith 1989). Gilroy suggests that 'Britain's "race" politics are quite inconceivable away from the context of the inner-city' (1987, 311). Shifting political

Background: Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study within which the Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. PEARL incorporated qualitative research to seek the views of young people about data linkage, including their opinions about appropriate safeguards and research governance. In this paper we focus on views expressed about the purpose and composition of research ethics committees.Methods: Digitally recorded interviews were conducted with 48 participants aged 17-19 years. Participants were asked about whether medical research should be monitored and controlled, their knowledge of research ethics committees, who should sit on these committees and what their role should be. Interview recordings were fully transcribed and anonymised. Thematic analysis was undertaken, assisted by the Framework approach to data management.Results: The majority of interviewees had little or no specific knowledge of ethics committees. Once given basic information about research ethics committees, only three respondents suggested there was no need for such bodies to scrutinise research. The key tasks of ethics committees were identified as monitoring the research process and protecting research participants. The difficulty of balancing the potential to inhibit research against the need to protect research participants was acknowledged. The importance of relevant research and professional expertise was identified but it was also considered important to represent wider public opinion, and to counter the bias potentially associated with self-selection possibly through a selection process similar to 'jury duty'. Conclusions: There is a need for more education and public awareness about the role and composition of research ethics committees. Despite an initial lack of knowledge, interviewees were able to contribute their ideas and balance the rights of individuals with the wider benefits from research. The suggestion that public opinion should be represented through random selection similar to jury duty may be worth pursuing in the light of the need to ensure diversity of opinion and establish trust amongst the general public about the use of 'big data' for the wider public good.