This handbook is written for patients and members of the public who want to understand more about the approaches, methods and language used by health-services researchers. Patient and public involvement (PPI) in research is now a requirement of most major health-research programmes, and this book is designed to equip these individuals with the knowledge and skills necessary for meaningful participation. Edited by award-winning mental-health researchers, the book has been produced in partnership with mental-health-service users and carers with experience of research involvement. It includes personal reflections from these individuals alongside detailed information on quantitative, qualitative and health-economics research methods, and comprehensively covers all the basics needed for large-scale health research projects: systematic reviews; research design and analysis using both qualitative and quantitative approaches; health economics; research ethics; impact and dissemination. This book was developed during a five-year research programme funded by the UK’s National Institute for Health Research (NIHR) called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP). The handbook clearly outlines research practices, and gives an insight into how public and patient representatives can be involved in them and shape decisions. Each chapter ends with a reflective exercise, and there are also some suggested sources of additional reading. People who get involved in health research as experts from experience now have a textbook to support their research involvement journey.
Edited by: Penny Bee, Helen Brooks, Patrick Callaghan and Karina Lovell
The manifold materialities of human remains
Claudia Fonseca and Rodrigo Grazinoli Garrido
In this article we explore the relational materiality of fragments of human cadavers used to produce DNA profiles of the unidentified dead at a forensic genetics police laboratory in Rio de Janeiro. Our point of departure is an apparently simple problem: how to discard already tested materials in order to open up physical space for incoming tissue samples. However, during our study we found that transforming human tissues and bone fragments into disposable trash requires a tremendous institutional investment of energy, involving negotiations with public health authorities, criminal courts and public burial grounds. The dilemma confronted by the forensic genetic lab suggests not only how some fragments are endowed with more personhood than others, but also how the very distinction between human remains and trash depends on a patchwork of multiple logics that does not necessarily perform according to well-established or predictable scripts.
From the Global to the Local
their own welfare and services – including education and health care – within the private sphere of their homes and local communities. The withdrawal and deterioration of UNRWA services available in the public sphere is ultimately paralleled by the increasing demand on Palestinian individuals, families and communities to be self-sufficient, in spite of the long-standing (and arguably increasing) precarity of their situations. UNRWA: A Brief Background UNRWA was established by UN General Assembly (UNGA) Resolution 302 (IV) in
Governing Precarity through Adaptive Design
solidarity with its victims. For a couple of decades it was successful in publicly challenging Western foreign policy in Africa, Latin America and Southeast Asia ( Duffield, 2007 : 51–4). Having once exercised a moral leadership, however, after a long struggle against donor absorption and UN control, an international direct humanitarian engagement finally yielded amid the horrors of Iraq and Syria. The War on Terror imposed limitations. Compared to the 1970s and 1980s, humanitarian agencies found their political room for manoeuvre significantly
these forms of disinformation. But they have not yet closely examined their impact in humanitarian crises. This is a remarkable oversight. In humanitarian crises, false information can have life-and-death consequences. As Jeanne Bourgault, President and Chief Executive Officer of Internews, states, false information can ‘undercut efforts to improve health, make disasters worse than they already are, alienate vulnerable populations, and even incite violence’ (quoted in Igoe, 2017 ). This article introduces the emerging research about online
Humanitarianism in a Post-Liberal World Order
redistribution of power at the international level (from one dominant state since the 1980s, the US, to two now) stems from the rise of China. A kind of bipolarity – a system dominated by two centres of power – has been re-established in global politics. As in other areas – trade, environment, security, public health, transport – the return to bipolarity has had a major impact. The implications of this are simple but profound: rules and norms that conflict in some way with the preferences of the Chinese government will no longer necessarily be
Mass vaccination and the public since the Second World War
Vaccinating Britain investigates the relationship between the British public and vaccination policy since 1945. It is the first book to examine British vaccination policy across the post-war period and covers a range of vaccines, providing valuable context and insight for those interested in historical or present-day public health policy debates. Drawing on government documents, newspapers, internet archives and medical texts it shows how the modern vaccination system became established and how the public played a key role in its formation. British parents came to accept vaccination as a safe, effective and cost-efficient preventative measure. But occasional crises showed that faith in the system was tied to contemporary concerns about the medical profession, the power of the state and attitudes to individual vaccines. Thus, at times the British public demanded more comprehensive vaccination coverage from the welfare state; at others they eschewed specific vaccines that they thought were dangerous or unnecessary. Moreover, they did not always act uniformly, with “the public” capable of expressing contradictory demands that were often at odds with official policy. This case study of Britain’s vaccination system provides insight into the relationship between the British public and the welfare state, as well as contributing to the historiography of public health and medicine.
George Campbell Gosling
This book examines the payment systems operating in British hospitals before the National Health Service (NHS). An overview of the British situation is given, locating the hospitals within both the domestic social and political context, before taking a wider international view. The book sets up the city of Bristol as a case study to explore the operation and meaning of hospital payments on the ground. The foundation of Bristol's historic wealth, and consequent philanthropic dynamism, was trade. The historic prominence of philanthropic associations in Bristol was acknowledged in a Ministry of Health report on the city in the 1930s. The distinctions in payment served to reinforce the differential class relations at the core of philanthropy. The act of payment heightens and diminishes the significance of 1948 as a watershed in the history of British healthcare. The book places the hospitals firmly within the local networks of care, charity and public services, shaped by the economics and politics of a wealthy southern city. It reflects the distinction drawn between and separation of working-class and middle-class patients as a defining characteristic of the system that emerged over the early twentieth century. The rhetorical and political strategies adopted by advocates of private provision were based on the premise that middle-class patients needed to be brought in to a revised notion of the sick poor. The book examines why the voluntary sector and wider mixed economies of healthcare, welfare and public services should be so well developed in Bristol.
1945. In 2016 there were nine. 3 For the public health profession, this has been a major achievement over a period of some seventy years. As we have seen, this progress has not been linear, nor consistent. Nevertheless, the mature vaccination system in Britain has created and reflects Jacob Heller's vaccine narrative – people believe that vaccines work, that they are safe and that they are an integral part of the modern, functioning British state. 4 Anxieties over outbreaks such as the 2012 measles outbreak in Swansea also seem to suggest that vaccination is part
Andrew C. Grundy
A Research Handbook for Patient and Public Involvement Researchers Chapter 1: Patient and Public Involvement (PPI) and the research process Andrew C Grundy Chapter overview This chapter defines and introduces the different stages of the research process: from identifying a problem, to reviewing the literature; then developing a research question; designing a study; obtaining funding and ethical approval; recruiting participants; collecting and analysing data; and reporting and disseminating findings. This chapter will outline how users of health services, their