Patient and Public Involvement in Health and Social Care Research


Book Description

This book provides a comprehensive overview of the latest theory and practice on Patient and Public Involvement (PPI) in research. Its seven chapters cover the historical and conceptual background; the various ways implementation can be approached and how they are put into practice; ethical considerations and critical perspectives, including on the potentially negative impacts of PPI; approaches to meaningful evaluation; a step by-step guide to planning PPI and conclusions with considerations for future research. Drawing on current literature, this book provides an essential reference work for research students and all who want to better understand PPI in practice. It offers exercises to address key questions, case examples and a checklist for planning PPI and includes a valuable glossary of terms.




Achieving Person-Centred Health Systems


Book Description

The idea of person-centred health systems is widely advocated in political and policy declarations to better address health system challenges. A person-centred approach is advocated on political, ethical and instrumental grounds and believed to benefit service users, health professionals and the health system more broadly. However, there is continuing debate about the strategies that are available and effective to promote and implement 'person-centred' approaches. This book brings together the world's leading experts in the field to present the evidence base and analyse current challenges and issues. It examines 'person-centredness' from the different roles people take in health systems, as individual service users, care managers, taxpayers or active citizens. The evidence presented will not only provide invaluable policy advice to practitioners and policymakers working on the design and implementation of person-centred health systems but will also be an excellent resource for academics and graduate students researching health systems in Europe. This title is available as Open Access on Cambridge Core.




Beyond the HIPAA Privacy Rule


Book Description

In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.




Critical Perspectives on User Involvement


Book Description

User involvement is now official policy throughout the health and social care system. Does this mean that user involvement practices are unproblematic? Has it lost its radical edge as it has become an accepted part of service delivery, research and policy making? This important text offers a critical stocktake of the state of user involvement, comprising contributions from both user activists and leading academics. The contributors consider different contexts in which involvement is taking place, both in the groups involved and the activities they are engaged in, and includes different and sometimes conflicting perspectives on issues such as whether we should measure the impact of involvement. This valuable collection will be a crucial resource for students in health and social care and in social work, for researchers developing participative research practice, and for user activists seeking to learn how others have developed distinctive ways of challenging professional perspectives. Book jacket.




Equity and excellence:


Book Description

Equity and Excellence : Liberating the NHS: Presented to Parliament by the Secretary of State for Health by Command of Her Majesty




Patient Involvement in Health Technology Assessment


Book Description

This is the first book to offer a comprehensive guide to involving patients in health technology assessment (HTA). Defining patient involvement as patient participation in the HTA process and research into patient aspects, this book includes detailed explanations of approaches to participation and research, as well as case studies. Patient Involvement in HTA enables researchers, postgraduate students, HTA professionals and experts in the HTA community to study these complementary ways of taking account of patients’ knowledge, experiences, needs and preferences. Part I includes chapters discussing the ethical rationale, terminology, patient-based evidence, participation and patient input. Part II sets out methodology including: Qualitative Evidence Synthesis, Discrete Choice Experiments, Analytical Hierarchy Processes, Ethnographic Fieldwork, Deliberative Methods, Social Media Analysis, Patient-Reported Outcome Measures, patients as collaborative research partners and evaluation. Part III contains 15 case studies setting out current activities by HTA bodies on five continents, health technology developers and patient organisations. Each part includes discussion chapters from leading experts in patient involvement. A final chapter reflects on the need to clearly define the goals for patient involvement within the context of the HTA to identify the optimal approach. With cohesive contributions from more than 80 authors from a variety of disciplines around the globe, it is hoped this book will serve as a catalyst for collaboration to further develop patient involvement to improve HTA. "If you’re not involving patients, you're not doing HTA!" - Dr. Brian O’Rourke, President and CEO of CADTH, Chair of INAHTA




The Palgrave Handbook of Volunteering, Civic Participation, and Nonprofit Associations


Book Description

Written by over 200 leading experts from over seventy countries, this handbook provides a comprehensive, state-of-the-art overview of the latest theory and research on volunteering, civic participation and nonprofit membership associations. The first handbook on the subject to be truly multinational and interdisciplinary in its authorship, it represents a major milestone for the discipline. Each chapter follows a rigorous theoretical structure examining definitions, historical background, key analytical issues, usable knowledge, and future trends and required research. The nine parts of the handbook cover the historical and conceptual background of the discipline; special types of volunteering; the major activity areas of volunteering and associations; influences on volunteering and association participation; the internal structures of associations; the internal processes of associations; the external environments of associations; the scope and impacts of volunteering and associations; and conclusions and future prospects. This handbook provides an essential reference work for third-sector research and practice, including a valuable glossary of terms defining over eighty key concepts. Sponsored by the International Council of Voluntarism, Civil Society, and Social Economy Researcher Associations (ICSERA; www.icsera.org), it will appeal to scholars, policymakers and practitioners, and helps to define the emergent academic discipline of voluntaristics.




Participatory Health Research


Book Description

This groundbreaking resource explores core issues in participatory health research (PHR) and traces its global emergence as a force for improving health and well-being, healthcare services, and quality of life. The PHR approach is defined as including community members, health practitioners, and decision-makers as co-researchers, using local knowledge to reduce disparities in care, advocate for responsive health policy, and accelerate positive change in society as a whole. The book’s first half surveys themes essential to the development of the field, including evaluating PHR projects, training professionals in conducting PHR, and the ambitious work of the International Collaboration for Participatory Health Research. International perspectives showcase the varied roles of PHR in addressing urgent local health problems in their specific public health and sociocultural contexts. Among the topics covered: Demonstrating impact in participatory health research Reviewing the effectiveness of participatory health research: challenges and possible solutions Kids in Action—participatory health research with children Participatory health research: an Indian perspective Participatory health research in Latin America: scientific production on chronic diseases Participatory health research in North America: from community engagement to evidence-informed practice Participatory Health Research benefits those teaching and learning about participatory health research at institutions of higher education and in community settings, addressing diverse fields including health promotion and disease prevention, medicine and public health, quality of life, social work, and community development.




Community Psychology and Community Mental Health


Book Description

Mental health practices and programs around the world face growing criticism from policymakers, consumers, and service providers for being ineffective, overly reliant on treatment by professionals, and overly focused on symptoms. Many have called for new paradigms of mental health and new practices that can better support recovery, community integration, and adaptive functioning for persons diagnosed with psychiatric disabilities. While there has recently been much discourse about transformation and recovery, there has yet to be a critical and systematic review that unpacks the concept of mental health systems transformation or that examines strategies for how to create transformative change in mental health. Community Psychology and Community Mental Health provides empirical justification and a conceptual foundation for transformative change in mental health, based on community psychology values and principles of ecology, collaboration, empowerment, and social justice. Chapters provide strategies for making changes at the level of society, policy, organizations, community settings, and mental health practices. The editors and authors draw from experience in different countries in recognition of the need to tailor change strategies to different contexts. The common experiences of the international perspectives represented underscore the importance and the need for a new paradigm while demonstrating that there are many alternatives and opportunities for pursuing transformative change. This book will be of interest to community mental health professionals, researchers, and students, as well as policymakers, administrators, and those with lived experience of mental health issues.




Participatory Research in Health


Book Description

Participatory research (PR) has already gained considerable importance both as a research strategy and as an educational process in recent years. This volume breaks new ground by presenting the experience and reflections of academics and practitioners, from both North and South, who are using this approach in the field of health. Contributors place PR in its historical and theoretical context. They examine issues of training and practice, drawing on experiences from Africa, Asia, Latin America, the USA and Europe. The case studies make clear the complexities and contradictions, as well as common experiences, which practitioners confront in diverse social, economic and political contexts. Questions of equity in terms of gender, race and class come to the fore, as do insights into the qualities, skills and attititudes required of practitioners. Participatory Rural Appraisal (PRA) methods are described in a number of case studies with particular stress being laid on ethical considerations, reliability of the results, and how to integrate PRA methods into a participatory research process.