Prelims

Half Title Page

Ethics and Integrity in Research with Older People and Service Users

Series Title Page

Advances in Research Ethics and Integrity

Series Editor: Dr Ron Iphofen, FAcSS, Independent Consultant, France

Recent Volumes:

Editorial Advisory Board

Professor Robert Dingwall, Dingwall Enterprises Ltd and Nottingham Trent University, UK

Dr Nathan Emmerich, Institute of Ethics, Dublin City University and Queens University Belfast, UK

Professor Mark Israel, University of Western Australia, Australia

Dr Janet Lewis, Former Research Director, Joseph Rowntree Foundation, UK

Professor John Oates, Open University, UK

Associate Professor Martin Tolich, University of Otago, New Zealand

Title Page

Advances in Research Ethics and Integrity Volume 9

Ethics and Integrity in Research with Older People and Service Users: Moving Beyond the Rhetoric

Edited by

Roger O'Sullivan

United Kingdom – North America – Japan – India – Malaysia – China

Copyright Page

Emerald Publishing Limited

Emerald Publishing, Floor 5, Northspring, 21-23 Wellington Street, Leeds LS1 4DL

First edition 2024

Editorial matter and selection © 2024 Roger O'Sullivan.

Individual chapters © 2024 The authors.

Published under exclusive licence by Emerald Publishing Limited.

Reprints and permissions service

Contact: www.copyright.com

No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the UK by The Copyright Licensing Agency and in the USA by The Copyright Clearance Center. Any opinions expressed in the chapters are those of the authors. Whilst Emerald makes every effort to ensure the quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the chapters' suitability and application and disclaims any warranties, express or implied, to their use.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-80455-423-4 (Print)

ISBN: 978-1-80455-422-7 (Online)

ISBN: 978-1-80455-424-1 (Epub)

ISSN: 2398-6018 (Series)

Dedication

To my lovely mum who embraced growing older and to my dad who never got that privilege.

Quote Page

‘If you think research is expensive, try disease’.

Mary Lasker (1900–1994)

Medical philanthropist, political strategist, and health activist.

Series Preface

This book series, Advances in Research Ethics and Integrity, grew out of foundational work with a group of Fellows of the UK Academy of Social Sciences (AcSS) who were all concerned to ensure that lessons learned from previous work were built upon and improved in the interests of the production of robust research practices of high quality. Duplication or unnecessary repetitions of earlier research and ignorance of existing work were seen as hindrances to research progress. Individual researchers, research professions and society all suffer in having to pay the costs in time, energy and money of delayed progress and superfluous repetitions. There is little excuse for failure to build on existing knowledge and practice given modern search technologies unless selfish ‘domain protectionism’ leads researchers to ignore existing work and seek credit for innovations already accomplished. Our concern was to aid well-motivated researchers to quickly discover existing progress made in ethical research in terms of topic, method and/or discipline and to move on with their own work more productively and to discover the best, most effective means to disseminate their own findings so that other researchers could, in turn, contribute to research progress.

It is true that there is a plethora of ethics codes and guidelines with researchers left to themselves to judge those more appropriate to their proposed activity. The same questions are repeatedly asked on discussion forums about how to proceed when similar long-standing problems in the field are being confronted afresh by novice researchers. Researchers and members of ethics review boards alike are faced with selecting the most appropriate codes or guidelines for their current purpose, eliding differences and similarities in a labyrinth of uncertainty. It is no wonder that novice researchers can despair in their search for guidance and experienced researchers may be tempted by the ‘checklist mentality’ that appears to characterize a meeting of formalized ethics ‘requirements’ and permit their conscience-free pursuit of a cherished programme of research.

If risks of harm to the public and to researchers are to be kept to a minimum and if professional standards in the conduct of scientific research are to be maintained, the more that fundamental understandings of ethical behaviour in research are shared the better. If progress is made in one sphere, all gain from it being generally acknowledged and understood. If foundational work is conducted, all gain from being able to build on and develop further that work.

Nor can it be assumed that formal ethics review committees are able to resolve the dilemmas or meet the challenges involved. Enough has been written about such review bodies to make their limitations clear. Crucially they cannot follow researchers into the field to monitor their every action; they cannot anticipate all of the emergent ethical dilemmas nor, even, follow through to the publication of findings. There is no adequate penalty for neglect through incompetence, nor worse, for conscious omissions of evidence. We have to rely upon the ‘virtues’ of the individual researcher alongside the skills of journal and grant reviewers. We need constantly to monitor scientific integrity at the corporate and at the individual level. These are issues of ‘quality’ as well as morality.

Within the research ethics field new problems, issues and concerns and new ways of collecting data continue to emerge regularly. This should not be surprising as social, economic and technological change necessitate constant reevaluation of research conduct. Standard approaches to research ethics such as valid informed consent, inclusion/exclusion criteria, vulnerable subjects and covert studies need to be reconsidered as developing social contexts and methodological innovation, interdisciplinary research and economic pressures pose new challenges to convention. Innovations in technology and method challenge our understanding of ‘the public’ and ‘the private’. Researchers need to think even more clearly about the balance of harm and benefit to their subjects, to themselves and to society. This series proposes to address such new and continuing challenges for both ethics committees and researchers in the field as they emerge.

The concerns and interests are global and well recognized by researchers and commissioners alike around the world but with varying commitments at both the ‘procedural’ and the ‘practical’ levels. This series is designed to suggest realistic solutions to these challenges – this ‘practical’ angle is the USP for the series. Each volume will raise and address the key issues in the debates, but also strive to suggest ways forward that maintain the key ethical concerns of respect for human rights and dignity, while sustaining pragmatic guidance for future research developments. A series such as this aims to offer practical help and guidance in actual research engagements as well as meets the often varied and challenging demands of research ethics review. The approach will not be one of abstract moral philosophy; instead, it will seek to help researchers think through the potential harms and benefits of their work in the proposal stage and assist their reflection of the big ethical moments that they face in the field often when there may be no one to advise them in terms of their societal impact and acceptance.

While the research community can be highly imaginative both in the fields of study and methodological innovation, the structures of management and funding and the pressure to publish to fulfil league table quotas can pressure researchers into errors of judgement that have personal and professional consequences. The series aims to adopt an approach that promotes good practice and sets principles, values and standards that serve as models to aid successful research outcomes. There is clear international appeal as commissioners and researchers alike share a vested interest in the global promotion of professional virtues that lead to the public acceptability of good research. In an increasingly global world in research terms, there is little point in applying too localized a morality, nor one that implies a solely Western hegemony of values. If standards ‘matter’, it seems evident that they should ‘matter’ to and for all. Only then can the growth of interdisciplinary and multinational projects be accomplished effectively and with a shared concern for potential harms and benefits. While a diversity of experience and local interests is acknowledged, there are existing, proven models of good practice which can help research practitioners in emergent nations build their policies and processes to suit their own circumstances. We need to see that consensus positions effectively guide the work of scientists across the globe and secure minimal participant harm and maximum societal benefit and, additionally, that instance of fraudulence, corruption and dishonesty in science decrease as a consequence.

Perhaps some forms of truly independent formal ethics scrutiny can help maintain the integrity of research professions in an era of enhanced concerns over data security, privacy and human rights legislation. But it is essential to guard against rigid conformity to what can become administrative procedures. The consistency we seek to assist researchers in understanding what constitutes ‘proper behaviour’ does not imply uniformity. Having principles does not lead inexorably to an adherence to principlism. Indeed, sincerely held principles can be in conflict in differing contexts. No one practice is necessarily the best approach in all circumstances. But if researchers are aware of the range of possible ways in which their work can be accomplished ethically and with integrity, they can be free to apply the approach that works or is necessary in their setting. Guides to ‘good’ ways of doing things should not be taken as the ‘only’ way of proceeding. A rigidity in outlook does no favours to methodological innovation, nor to the research subjects or participants that they are supposed to ‘protect’. If there were to be any principles that should be rigidly adhered to they should include flexibility, open-mindedness and the recognition of the range of challenging situations to be met in the field – principles that in essence amount to a sense of proportionality. And these principles should apply equally to researchers and ethics reviewers alike. To accomplish that requires ethics reviewers to think afresh about each new research proposal, to detach from pre-formed opinions and prejudices, while still learning from and applying the lessons of the past. Principles such as these must also apply to funding and commissioning agencies, to research institutions and to professional associations and their learned societies. Our integrity as researchers demands that we recognize that the rights of our funders and research participants and/or ‘subjects’ are to be valued alongside our cherished research goals and seek to embody such principles in the research process from the outset. This series will strive to seek just how that might be accomplished in the best interests of all.

By

Ron Iphofen (Series Editor)

List of Figures and Tables

List of Abbreviations

(AS)

Alzheimer's Society

(BIPOC)

Black, Indigenous, and People of Color

(CDC)

Centers for Disease Control and Prevention

(CRANE)

Clinical Research Data Warehouse Environment

(CRN)

Clinical Research Network

(CBPR)

Community-Based Participatory Research

(CER)

Comparative Effectiveness Research

(DPIA)

Data Protection Impact Assessment

(EU)

European Union

(EC)

European Commission

(ERC)

European Research Council

(GDPR)

General Data Protection Regulation

(GAO)

Government Accountability Office

(HIPAA)

Health Insurance Portability and Accountability Act

(HRS)

Health Research Authority

(ICEnR)

Indigenous Community Engaged Research Method

(IRB)

Institutional Review Board

(IAP)

International Association for Public Participation

(ISPOR)

International Society for Pharmacoeconomics and Outcomes Research

(LEAP)

Lived Experience Advisory Panel

(LTSS)

Long-term Services and Supports

(MeSH)

Medical Subject Headings

(NIA)

National Institute on Aging

(NHS)

National Health Service

(NICE)

National Institute for Health and Care Excellence

(NIHR)

National Institute of Health Research

(NIH)

National Institutes of Health

(OPERAT)

Older Peoples External Residential Tool

(PAC)

Patient Advisory Council

(PPI)

Patient and Public Involvement/Public Patient Involvement/Personal and Public Involvement

(PCOR)

Patient-Centered Outcomes Research

(PCORI)

Patient-Centered Outcomes Research Institute

(PWD)

People with Dementia

(PiiAF)

Public Involvement Impact Assessment Framework

(RDS)

Research Design Service

(REC)

Research Ethics Committee

(SAIL) databank

Secure Anonymised Information Linkage

(The Bureau)

The Bureau of Sages

(Brexit)

United Kingdom's withdrawal from the EU

(UN)

United Nations

(VSC)

Virtual Senior Center

(WHO)

World Health Organization

About the Editor

Professor Roger O'Sullivan is the Director of the Ageing Research and Development Division within the Institute of Public Health in Ireland and visiting Professor at The Bamford Centre for Mental Health and Wellbeing, Ulster University. He was the Director of the Centre for Ageing Research and Development from 2007 to 2015 and prior to that Research Coordinator with the Rural Community Network in Northern Ireland (1999–2007). Professor O'Sullivan has extensive experience of undertaking research as well as commissioning, managing and administering research programmes with particular expertise on public policy and services relating to ageing and older people. He was awarded membership through distinction of the Faculty of Public Health, UK in 2017 and in 2020 he was made Fellow of the Gerontological Society of America.

About the Contributors

Katherine M. Abbott, PhD, is Professor of Gerontology and the Executive Director of the Scripps Gerontology Center at Miami University in Oxford, Ohio. Her research and teaching focuses on preference-based person-centred care and the social networks and health of older adults receiving long-term services and supports. She is the co-founder of Preference Based Living, whose mission is to conduct studies that build understanding of individual preferences and test innovative methods to honour preferences for people receiving long-term services and supports.

Peter Bates has provided consultancy support through the National Development Team for Inclusion since 1999. He previously worked in social services, the NHS and audit. Project work has been undertaken for a range of national bodies including the NHS Confederation, Department of Health and the Scottish Government. In his work with over 150 local service providers, Peter has combined a detailed knowledge of what needs to be done to make a difference, with an understanding of frontline work in hard-pressed services. He has published in the areas of employment, disability, empowerment and inclusion. Peter has also been supporting public involvement in academic and NHS infrastructure organizations since 2011 and contributed to research projects valued at £7m. As well as convening patient and public advisory groups, he has developed over 30 ‘How To’ guides addressing the practicalities of research co-production.

Rebecca L. H. Berman, PhD, a research scientist at the Leonard Schanfield Research Institute at CJE SeniorLife since 2006, has focused her applied research career on building knowledge through practical research that enhances the ability of social service professionals to work with older people and their families. Her work has encompassed engaging stakeholders in research processes, evaluating programs for persons with dementia, caregivers and other older adults, developing a practical assessment tool for medication management, understanding family decision-making for seeking a diagnosis of dementia and ageing in the context of community life. Dr Berman was a Research Assistant Professor at the Buehler Center on Aging in the Feinberg School of Medicine at Northwestern University from 2000 to 2005 where she co-directed a training and technical assistance project to build the capacity of social service agencies to conduct evaluation research.

Missy Destrampe, BA, is a Project Manager at Collective Insight and also assumes the role of Engagement Specialist for a significant portion of Collective Insight's work as seen in her experience implementing Steering Committees, focus groups and strategy workgroups. She holds a Bachelor of Arts degree in English from the University of Massachusetts, Amherst.

Mrs Shanaz Dorkenoo has a background in the NHS. Initially she trained as a Mental Health Nurse, before moving into Senior Management positions within Social care, eventually returning to the NHS to work in the area of Complaints. Throughout her career she has travelled extensively, working in challenging environments. Mrs Dorkenoo held a lay member position on the National Institute for Health Research (NIHR), for more than 20 years; and served on several study steering committees and on the panel for the evaluation for grant application funding. In addition, she held a Ministerial Public Appointment with the Care Council Wales, before retiring entirely from work on health grounds due to a Neurological condition.

Amy R. Eisenstein, PhD, is a Senior Program Officer at RRF Foundation for Aging, in Chicago, Illinois. She also holds adjunct appointments at Northwestern University in the Feinberg School of Medicine, Departments of Medical Social Sciences and Preventive Medicine, and at the University of Illinois at Chicago, in the School of Public Health. Dr Eisenstein's research interests include issues related to ageing, health and disease with a focus on social isolation, loneliness and intergenerational programming. She works to elevate the importance of incorporating the voice of the older adult in all her research. Dr Eisenstein's past experience has included the use of mixed methodologies, including surveys, secondary data analysis, interviews, focus groups and content analysis.

Dani Skenadore Foster, MSW, is a Project Director and leads the Policy and Program Innovation Division with Collective Insight. She has 15+ years of experience developing and implementing effective community engagement strategies to improve service programs, policies and research. She holds a Master's degree in Macro Practice Social Work from the Helen Bader School of Social Welfare at the University of Wisconsin – Milwaukee.

Dr Carol Reynolds Geary (PhD, MBA, RN) is an Assistant Professor in the Department of Pathology & Microbiology at the University of Nebraska Medical Center (UNMC). Her work has two methodological foci: creation and use of de-identified electronic health record data for research purposes and patient and stakeholder engagement in research. She has worked to develop the relationship networks and expertise to support researchers with interest in patient engagement in their research. She co-led the UNMC research team through completion of their initial Eugene Washington Award through the Patient-Centered Outcomes Research Institute (PCORI). She has also served on the Migratory and Seasonal Agricultural Workers Engagement Project, National Advisory Council and holds co-leadership responsibility for UNMC's Clinical Research Data Warehouse Environment (CRANE).

Lyn M. Holley, PhD, is the inaugural Dr Chuck Powell Professor in the Department of Gerontology at University of Nebraska Omaha (UNO), the inaugural (2015) UNO Service Learning Academy Faculty Fellow, and has served twice as Vice President of the UNO Faculty Senate. Dr Holley's research helps improve services for elders – in general and for minority elders, and helps improve intergenerational relationships. She has published articles in several journals, including ‘The Gerontologist’, ‘Educational Gerontology’, ‘Gerontology and Geriatrics Education’, ‘Quality in Ageing and Older Adults’ and ‘Public Performance Management Review’. She earned her BA in Psychology from American University (1964). After working in Federal (including service in the US Army Reserve) and International public service (in the United Nations International Civil Service Commission), she earned an MPA (UNO, 1995) and PhD (UNO, 1999). Following gerontology research at the University of Kansas and University Wisconsin-Milwaukee, she joined UNO's gerontology faculty in 2004.

Ron Iphofen, FAcSS (British), is an Independent Consultant with international recognition for expertise on research ethics and professional standards in research. He is a Fellow of the Academy of Social Sciences and the Royal Society of Medicine. Since retiring in 2008 from his post as the Director of Postgraduate Studies in the School of Healthcare Sciences, Bangor University, Wales, he has presented at over 250 national and international events for universities, government, research institutes and the European Commission (EC) and European Research Council (ERC). He has served in the Universities Sector of the Association for Research Ethics, UK. He has acted as consultant, adviser and/or delivered training on research ethics for the Scottish Executive, UK Government Social Research, National Disability Authority (Ireland), National Centre for Social Research, Social Research Association, Audit Commission, UK Research Integrity Office, Ofsted, ANR (French Research Funding agency), SSRC (Canada) among many others. His primary consultative activity at present is for agencies of the European Commission and European Union-funded research projects.

Dr Erin McGaffigan, PhD, started Collective Insight in 2014 to demonstrate how effective engagement is possible and a powerful system improvement strategy. Dr McGaffigan, as the founder and leader for a certified woman-owned business comprised of engagement experts, has extensive experience in the area of community-based long-term services and supports for elders and people with diverse disabilities. Dr McGaffigan received a Master of Science in Public Policy from the University of Massachusetts, Boston and a Master of Social Work with a concentration in Community Organization, Public Policy and Administration from Boston College. She received her PhD from the University of Massachusetts, Boston, where she focused her dissertation research on the complex factors and related outcomes of community engagement practices.

Azusa Mokuta worked as a Teaching and Research assistant in the Department of Gerontology at the University of Nebraska – Omaha. She is currently a Master's student in the Clinical Mental Health Counseling Program of Southern Oregon University. Her career goal is to become a Licensed Professional Counselor working with older adults.

Dr Rahena Mossabir is a Senior Research Fellow at the Bradford Institute for Health Research. She has worked in various areas of applied health research over a 15 year period, including mental health, management of long-term conditions and dementia care. Rahena's main areas of expertise are qualitative methodology and process evaluations. She has an MA in Social Research Methods and a PhD in Socio-spatial experiences of people living with dementia in the community.

Dr Kelly Norwood is a Lecturer in Psychology within the School of Psychology, Ulster University. She chairs the Palliative Care Research Forum, Northern Ireland and is a fellow of the Higher Education Academy. Kelly completed her BSc and PhD (Biological Psychology) in the School of Psychology and held Research positions at Ulster University and Queen's University, Belfast. Kelly has worked on various projects that have investigated the neurobiology and evaluated novel treatments for Alzheimer's disease. Kelly's research focuses on improving quality of life and end-of-life care for people living with chronic disease with a focus on dementia. Kelly works collaboratively with the Alzheimer's Society to develop interventions aimed at providing optimal care to those living with dementia.

Jeff Ordway is a person who has lived with debilitating pain for more than three decades, which caused him to retire early from a career as an educator. He now owns a small farm, where he spends most of his time. He has been a member of Patient Advisory Boards for the University of Missouri's Center for Patient-Centered Outcomes Research, as well as for the Greater Plains Collaborative, a regional Clinical Research Network, where he was the Lead Patient and Co-lead for Engagement from 2020 to 2023. He has been a patient co-investigator on research projects at both the University of Missouri and the University of Nebraska. In these roles, he has worked on study design and implementation, patient recruitment and retention, data assessment and dissemination. He currently works with the Patient-Centered Outcomes Research Network as a member of the Engagement Core, working to establish Engagement norms across the network.

Aideen Sheehan is Knowledge Translation Officer in the Institute of Public Health (IPH). After 20 years of writing news, features and analysis as a newspaper journalist, she moved into research and data analysis. Prior to taking up post in IPH she worked in The Irish Longitudinal Study of Ageing (TILDA), Trinity College Dublin and also the Central Statistics Office in Ireland.

Dr Eiddwen Thomas has a background in health and social care services and research and started her career working in the NHS before moving into higher education. She is a lay member, evaluating grant and project applications for funding on various committees for Health and Care Research Wales and the National Institute for Health Research (NIHR). She has acted as a lay member on various projects awarded by funding organisations and has been a lay member of a research ethics committee, ensuring projects incorporate the views of, and involve, lay members when designing, planning, implementing and disseminating research. She also reviews policy and other documents to ensure they are accessible to, and understood by, patients and service users before publication.

Sophia Webber, BS, is Project Manager of Collective Insight's Training and Support Division. As Project Manager, Sophia currently supports engagement capacity building through the design and implementation of engagement training, educational tools and content development, such as podcasts, videos and more. She received a Bachelor of Science degree in Community and Environmental Sociology as well as certificates in Global Health, Food Systems and Gender and Women's studies from the University of Wisconsin – Madison.

Mary Webster is a PhD researcher within the School of Psychology, Ulster University. Her research focuses on family conflict and dynamics within the family system with the aim to improve care and well-being outcomes for individuals living with dementia and those who care for them. Mary has held research positions at the Bamford Centre for Mental Health and Wellbeing, Ulster University and Open Lab, Newcastle University. Mary completed her MPhil at the Institute of Health and Society, Newcastle University, which explored digital peer support for adolescents living with Type 1 Diabetes, and she completed her MSc in Applied Psychology in Mental Health and BSc Hons Psychology at Ulster University.

Robin Webster is an Adjunct Lecturer, Irish Centre for Social Gerontology, National University of Ireland, Galway. He is a social science graduate, with postgraduate qualifications in education, social work and gerontology. His previous positions include CEO of Age Action, Ireland, Director of AONTAS, the National Association of Adult Education in Ireland, Director of Age Concern Scotland, National Development Officer, Society of St Vincent de Paul in Ireland, Lecturer in Social Work, Trinity College, Dublin, Lecturer in Gerontology, the Open University in Ireland and HM Inspector of Schools (Further Education) in the Scottish Education Department.

Andy Willis is a History graduate, lifelong Chelsea FC supporter, proud socialist, former Secondary School Teacher and trade unionist – NUT Division Secretary for Peterborough 2007–2011, married with two daughters and a son; with the recent addition of a Grandson. It has been a life well lived alongside six episodes of severe mental illness which has amounted to eight years of his life. His dual diagnosis is recurrent depression and emotionally unstable personality disorder with each episode having significant periods of crisis and suicide risk. Since discharge from psychiatric care in 2017, he is a member of the Lived Experience Advisory Panel (LEAP) within the local Personality Disorder Hub as well as joining the LEAP for a national study of depression. He has been privileged to make many Co-Production ‘lived experience’ contributions all with the intention of working collaboratively to improve recovery outcomes and patient experience for others. He is also a national Suicide Prevention Influencer.

Foreword

I am delighted to introduce this book that explores the intersection of research ethics, research integrity, the well-being and voices of older people and service users.

Through a collection of fascinating contributions, this volume shares insights on the ethical and practical aspects as well as the challenges of researching older people and service users.

The authors explore topics such as people living with dementia, family conflict in caregiving, mental health, public patient involvement and the insights of patients and nursing home residents. This volume also covers the history and cultural context of our methods of involving users in research.

I found this collection of chapters informative as well as challenging but overall illustrative of the importance and value of collaboration and dialogue among researchers, service providers, policymakers, as well as older people and service users themselves.

Working with older people has been a major part of my life both professionally and as a volunteer starting in school. Recently, I became a great grandfather in a family spread over six countries and this experience has convinced me of the value of understanding ageing through the life course approach for individuals, families, communities and countries. We need to recognize that growing older starts in the womb not in a hospice or nursing home and therefore work in an inclusive manner to understand the different experiences of ageing – both positive and negative.

This volume has also reinforced my view that the highest standards of research, research ethics and research integrity can be best achieved by widening the voices that we hear, to avoid ‘group think’, which unfortunately too often guides decision-making.

I hope that the greater knowledge and understanding generated through this volume and this series will have a positive impact on the lives of service users of all ages by recording and celebrating their lives and valuing their contribution as partners rather than only objects of research.

I commend the contributors and the editor of this book for their dedication. Their collective experience, knowledge and insights will serve as a valuable resource for researchers, students, practitioners, older people and all those engaged in the field of research, policy, service delivery as well as the fields of social and health sciences, ageing, user involvement, public patient involvement, community-based participatory action research and of course research ethics and research integrity.

I hope this book fosters discussion, encourages reflection and inspires action to enhance the quality and practice of research in this field.

Robin Webster

Irish Centre for Social Gerontology

Institute of Lifecourse and Society

National University of Ireland Galway

Preface

With the ever increasing, competing, contrasting and sometimes conflicting views on society today, we need, now more than ever, robust research to generate valid knowledge, improve and deepen our understanding, identify or solve problems and help inform evidence-based decision-making.

This volume in the Advances series works on the premise that there is much to be gained from utilizing the knowledge, expertise and insights from older people and service users. However, at the same time, there is much to be learned, addressed and developed if we are to move beyond rhetoric and tokenism.

This volume is aimed at those who want to understand the theoretical, philosophical and, in particular, the practical aspects of research with older adults and service users, not simply as ‘the subjects of research’ but also as those who have views, knowledge and experiences that can help advance research to inform services, policy, practice and indeed society as a whole.

It brings together contributors from the US, Europe and the UK to share insights from their work or personal experience in a bid to both educate and also challenge.

The volume is organized into three sections – ‘Views From the Researchers’, ‘Views From the Researched’ and ‘Views From Those Who Fall In Between’ such narrow categorizations. It is important to critically approach and reflect upon traditional constructs in research – not only recognizing the limitations with some concepts, language and terms in research as applied to our field but also wider considerations about how we can help advance research beyond traditional boundaries and embed collaboration and dialogue as a foundation.

The diversity and the expertise of older people as patients, consumers, carers, volunteers, workers and increasingly as researchers is an underlying theme within this book.

Likewise, the contents also reinforce that we must recognize we have a much more highly educated older population and groups of service users who, more than ever before, understand their rights and can articulate these rights more easily than previous generations.

During the planning and production of this book, the COVID-19 pandemic struck and the related public health social measures were set in place. The challenge for society as a whole was immense and so too for the research community in the drive to produce valid and timely knowledge – not just on COVID-19 issues but wider issues as well.

As we move to a post COVID-19 era it is clear that social participatory research becomes even more crucial in understanding the everyday challenges, changing dynamics, contexts and needs of individuals, communities and organizations.

This book highlights the value of defining and agreeing clear research goals and roles; focusing on quality, relevance and overall impact, addressing dynamics, cultural contexts and especially the importance of fostering an inclusive environment that encourages the active involvement of those outside the research community in planning research, data collection, analysis and interpretation.

I would like to take this opportunity to thank the series editor, Dr Ron Iphofen, for his invaluable support and wisdom, for the time and excellent contributions of all the authors who so generously shared their insights and expertise. I would also like to thank the team at Emerald especially Katy Mathers, Lauren Kammerdiener, Jo Sharrocks and Joshi Monica.

Finally, what is clear from the collective voice of this book is that flexibility, inclusivity and a commitment to collaborative decision-making and addressing power relationships will be key in planning and conducting meaningful and impactful research as we move forward. We must recognize and accept it is no longer a question of should older people and service users be involved in research or if they have valid knowledge or relevant experiences, but, rather to what extent they will or want to be involved in the research process and to assign tokenism within research as a legacy of the past.

Roger O'Sullivan