Health Research Access to Personal Confidential Data in England and Wales: Assessing any gap in public attitude between preferable and acceptable models of consent

England and Wales are moving toward a model of ‘opt out’ for use of personal confidential data in health research. Existing research does not make clear how acceptable this move is to the public. While people are typically supportive of health research, when asked to describe the ideal level of control there is a marked lack of consensus over the preferred model of consent (e.g. explicit consent, opt out etc.). This study sought to investigate a relatively unexplored difference between the consent model that people prefer and that which they are willing to accept. It also sought to explore any reasons for such acceptance. A mixed methods approach was used to gather data, incorporating a structured questionnaire and in-depth focus group discussions led by an external facilitator. The sampling strategy was designed to recruit people with different involvement in the NHS but typically with experience of NHS services. Three separate focus groups were carried out over three consecutive days. The central finding is that people are typically willing to accept models of consent other than that which they would prefer. Such acceptance is typically conditional upon a number of factors, including: security and confidentiality, no inappropriate commercialisation or detrimental use, transparency, independent overview, the ability to object to any processing considered to be inappropriate or particularly sensitive. This study suggests that most people would find research use without the possibility of objection to be unacceptable. However, the study also suggests that people who would prefer to be asked explicitly before data were used for purposes beyond direct care may be willing to accept an opt out model of consent if the reasons for not seeking explicit consent are accessible to them and they trust that data is only going to be used under conditions, and with safeguards, that they would consider to be acceptable even if not preferable

New Spaces: Safeguarding Students from Violence and Hate

Full report of the HEFCE Catalyst funded projectSexual assault, harassment, violence and hate crime on university campuses is a prevalent and pressing concern. A recent Universities UK taskforce report recommended that urgent action in this area is needed. Universities are significant sites for implementing a joined-up approach and tackling these issues. As a campus of Changemakers, students, inter-disciplinary researchers, professional and support staff at The University of Northampton decided to take action to address these significant and important issues, in particular within the context of a major campus move to a town centre location. As one of only 60 institutions across the country to be awarded funding from HEFCE’s Catalyst fund, this ‘New Spaces: Safeguarding Students from Violence and Hate’ cross collaborative project aimed to create vital partnerships in tackling sexual violence and hate crime on campus. The aims of the project were to evaluate existing policies and develop a student-led collaborative approach to identify what currently happens when disclosures are made; staff and student perceptions, knowledge and experiences within the campus transition; as well as providing recommendations for new institutional policies, strategies and recommendations to support students in reporting harassment, sexual abuse, sexual violence and hate crime. This project also contributes to HEFCE’s wider work in creating guidelines and recommendations for HEIs for addressing these issues. A survey of the published literature, as well as an evaluation of existing processes and policies at The University of Northampton were carried out within this project. Data collection involved 2 Staff and 2 student focus groups, as well as 11 interviews with members of the university management team. These were conducted to discuss staff and student experiences, what support was in place for disclosures and recommendations for future practice within the transition to the new campus. One of the student focus groups utilised photo-elicitation methods to allow students to visually conceptualise and create a new, safe campus space. Recommendations are provided for understanding the prevalence of these issues within a campus context; tackle normative beliefs which may influence how they are perceived; increasing knowledge and awareness of sexual violence and hate crime; implementing mechanisms for disclosure and reporting; addressing issues related to security measures and procedures; enhancing partnership working within the local community. These recommendations have local impact and are being used to inform institutional policies and procedures at The University. Project findings are also being implemented into HEFCE’s wider work and national action around these issues. Internationally, the dissemination of these findings is contributing to the limited research in this area

Suicidal students' use of and attitudes to primary care prevention services

Aim The aims of this study were to improve responses to students in distress and who are feeling suicidal, to help practitioners to increase their responsiveness to those at high risk of suicide and to develop effective responses to those affected by their deaths. The study sought to build a detailed picture of students’ patterns of service use. Background National suicide prevention strategies emphasise that suicide prevention requires the collaboration of a wide range of organisations. Among these, primary care services play a key role in relation to suicide prevention for young people in crisis. Methods This study, undertaken between 2004 and 2007, focused on 20 case studies of student suicide that took place in the United Kingdom between May 2000 and June 2005. It adopted a psychological autopsy approach to learn from a wide range of informants, including parents, friends, university staff and the records of coroners or procurator fiscals. Twenty families gave permission for their son’s or daughter’s death to be included in the study and agreed to participate in the study. Informants were interviewed in person and the data were analysed thematically. Analysis of the case study data suggested that in a number of cases students had failed to engage with services sufficiently early or in sufficient depth. Primary care practitioners need to be proactive in communicating concerns about vulnerable students to student support services. At local levels, collaboration between student support and National Health Service practitioners varied considerably and channels of communication need to be developed

Anonymising Clinical Data for Secondary Use

Secondary use of data already collected in clinical studies has become more and more popular in recent years, with the commitment of the pharmaceutical industry and many academic institutions in Europe and the US to provide access to their clinical trial data. Whilst this clearly provides societal benefit in helping to progress medical research, this has to be balanced against protection of subjects' privacy. There are two main scenarios for sharing subject data: within Clinical Study Reports and Individual Patient Level Data, and these scenarios have different associated risks and generally require different approaches. In any data sharing scenario, there is a trade-off between data utility and the risk of subject re-identification, and achieving this balance is key. Quantitative metrics can guide the amount of de-identification required and new technologies may also start to provide alternative ways to achieve the risk-utility balance.Comment: 25 page

How do healthcare professionals interview patients to assess suicide risk?

Background: There is little evidence on how professionals communicate to assess suicide risk. This study analysed how professionals interview patients about suicidal ideation in clinical practice. Methods: Three hundred nineteen video-recorded outpatient visits in U.K. secondary mental health care were screened. 83 exchanges about suicidal ideation were identified in 77 visits. A convenience sample of 6 cases in 46 primary care visits was also analysed. Depressive symptoms were assessed. Questions and responses were qualitatively analysed using conversation analysis. χ 2 tested whether questions were influenced by severity of depression or influenced patients’ responses. Results: A gateway closed question was always asked inviting a yes/no response. 75% of questions were negatively phrased, communicating an expectation of no suicidal ideation, e.g., “No thoughts of harming yourself?”. 25% were positively phrased, communicating an expectation of suicidal ideation, e.g., “Do you feel life is not worth living?”. Comparing these two question types, patients were significantly more likely to say they were not suicidal when the question was negatively phrased but were not more likely to say they were suicidal when positively phrased (χ 2 = 7.2, df = 1, p = 0.016). 25% patients responded with a narrative rather than a yes/no, conveying ambivalence. Here, psychiatrists tended to pursue a yes/no response. When the patient responded no to the gateway question, the psychiatrist moved on to the next topic. A similar pattern was identified in primary care. Conclusions: Psychiatrists tend to ask patients to confirm they are not suicidal using negative questions. Negatively phrased questions bias patients’ responses towards reporting no suicidal ideation

Trust and mistrust in the lives of forcibly displaced women and children

This paper aims to consider the experiences of displaced women and children throughout the experience of displacement and the issue of trust (or mistrust) throughout this journey towards future emplacement. Issues around trust and mistrust in conflict situations and considerations around interpersonal and broader based gender-based violence in politicised contexts are explored. Various stages of displacement are viewed and, through the use of examples, from experiences within refugee camps, reception in host countries and resettlement in countries of asylum insights into the lived experiences of displaced women and children are provided. This paper therefore draws upon research projects and practitioner experience, including research carried out within refugee camps, in the UK on the dispersal of asylum seekers, qualitative research into agency responses to the trafficking of children and young people, plus a scoping study involving qualitative research into non-statutory understandings of trafficking.