Patient experience feedback: we need to engage with the issues of using big data methods to capture the human voice

The NHS regularly asks its patients to complete surveys reporting on the quality of care they have received. These surveys include opportunities for patients to submit feedback in their own words. Carol Rivas describes how computational and digital methods can be used to analyse and report patient feedback in an efficient and timely manner. However, it is important to recognise and resolve some of the issues arising from use of these methods; from the need to avoid reducing patients’ voices to data points, to the risks of outputs being viewed as incontestable “truths”

Collaborative working within UK NHS secondary care and across sectors for COPD and the impact of peer review : qualitative findings from the UK National COPD Resources and Outcomes Project

Introduction: We investigated the effects on collaborative work within the UK National Health Service (NHS) of an intervention for service quality improvement: informal, structured, reciprocated, multidisciplinary peer review with feedback and action plans. The setting was care for chronic obstructive pulmonary disease (COPD). Theory and methods: We analysed semi-structured interviews with 43 hospital respiratory consultants, nurses and general managers at 24 intervention and 11 control sites, as part of a UK randomised controlled study, the National COPD Resources and Outcomes Project (NCROP), using Scott’s conceptual framework for action (inter-organisational, intra-organisational, inter-professional and inter-individual). Three areas of care targeted by NCROP involved collaboration across primary and secondary care. Results: Hospital respiratory department collaborations with commissioners and hospital managers varied. Analysis suggested that this is related to team responses to barriers. Clinicians in unsuccessful collaborations told ‘atrocity stories’ of organisational, structural and professional barriers to service improvement. The others removed barriers by working with government and commissioner agendas to ensure continued involvement in patients’ care. Multidisciplinary peer review facilitated collaboration between participants, enabling them to meet, reconcile differences and exchange ideas across boundaries. Conclusions: The data come from the first randomised controlled trial of organisational peer review, adding to research into UK health service collaborative work, which has had a more restricted focus on inter-professional relations. NCROP peer review may only modestly improve collaboration but these data suggest it might be more effective than top-down exhortations to change when collaboration both across and within organisations is required

A systematic review of Relationships and Sex Education outcomes for students with intellectual disability reported in the international literature

Background: Little is known about how to evaluate relationships and sex education (RSE) delivered to students with intellectual disability and what stakeholders perceive are important outcomes. The present study aimed to systematically review existing studies on outcomes of RSE, as the first step in the development of a core outcome set (COS) for students with intellectual disability. Method: A systematic literature process included two stages: (1) searching for studies reporting on RSE outcomes for students with intellectual disability and (2) studies reporting on measurement properties (e.g. validity, reliability and responsiveness) of standardised instruments identified in stage 1. Results: A total of 135 RSE outcomes were extracted from 42 studies: 43 outcomes for students in secondary education and 92 outcomes for students in further education. No RSE outcomes were reported for primary education. Outcomes referred to the human body, hygiene, relationships, sexuality, sex and its consequences, inappropriate and appropriate social and sexual behaviour, keeping safe, emotional vocabulary and positive self-esteem. Outcomes were predominantly knowledge-based, rather than relating to skills and attitudes development. Students with intellectual disability, parents and teachers perceive different RSE outcomes meaningful. Five instruments were used to measure the outcomes, but none have established psychometric properties with this population. Conclusions: The comprehensive list of RSE outcomes for students with intellectual disability will be used to inform the next steps of a Core Outcome Set needed for RSE evaluations in research and education settings. There is an urgent need to develop standardised instruments validated for students with intellectual disability

Negotiating psychological abuse: a qualitative study of white British, Caribbean and African women in inner London

PhDThere is a lack of knowledge about the effects of social and cultural context on partner abuse. This qualitative study uses interviews to explore the perceptions, experiences and relational interactions of 20 women with current psychological abuse from intimate partners, taking into account social and cultural context. Women were recruited from primary care practices in Hackney, east London and also from community groups and by adverts and snowballing. Semi-structured interviews were conducted with participants, following recruitment and in 12 cases also at four to six months after this. Interviews aimed to elicit rich narratives from the women, using open-ended questions. Eleven white British, five Caribbean and four African women were interviewed. The study took a social constructivist approach and was underpinned by symbolic interactionism. Analysis included a consideration of the similarities and differences across cultural and ethnic groups. All 32 interviews (from both first and second interviews) were audiotaped, transcribed, and analysed using grounded theory. Conceptualisations drew on Gillis’ and Smart’s work on social norms, Goffman’s approach to dramaturgy, and developments of aspects of Goffman’s work by Hochschild and Cavanagh in particular. This revealed the work the women did in setting up and managing their roles, identities and experiences, particularly gender and emotions work and the way they set and shifted boundaries in the relationship

Ethically Driven and Methodologically Tailored: Setting the Agenda for Systematic Reviews in Domestic Violence and Abuse

PURPOSE: Systematic reviews have an important, and growing, role to play in the global evidence eco-system of domestic violence and abuse. Alongside substantive contributions to knowledge, such reviews stimulate debates about ethical reviewing practices and the importance of tailoring methods to the nuances of the field. This paper aims to pinpoint a set of ethical and methodological priorities to guide and enhance review practices specifically in the field of domestic abuse. METHOD: The five Pillars of the Research Integrity Framework (ethical guidelines for domestic abuse research) are used to interrogate the systematic review process. To do so, the Framework is retrospectively applied to a recently completed systematic review in domestic abuse. The review included a rapid systematic map and in-depth analysis of interventions aimed at creating or enhancing informal support and social networks for victim-survivors of abuse. RESULTS: Ethical and methodological priorities for systematic reviews in domestic abuse include (1) Safety and wellbeing: maintaining the wellbeing of researchers and stakeholders, and appraising the ethics of included studies, (2) Transparency/ accountability: transparent reporting of research funding, aims and methods together with explicit consideration of authorship of outputs, (3) Equality, human rights and social justice: developing diverse review teams/ Advisory groups, and review methods that aim to search for, and report, diverse perspectives. Considering researcher positionality/ reflexivity in the review, (4) Engagement: collaboration with non-academic stakeholders and individuals with lived experience throughout the review process, (5) Research Ethics: independent ethical scrutiny of systematic review proposals with input from researchers with expertise in systematic reviews and domestic abuse. CONCLUSION: Additional research is required to comprehensively examine the ethics of each stage of the review process. In the meantime, attention should be given to the underpinning ethical framework for our systematic review practices and the wider research infrastructure that governs reviews