Meaningful and Safe : The Ethics and Ethical Implications of Patient and Public Involvement in Health and Medical Research / edited by Virginia Minogue and Jon Salsberg.

Format:

Book

Contributor:

Minogue, Virginia, editor.

Salsberg, Jon, editor.

Language:

English

Subjects (All):

Medical ethics.

Medicine--Research.

Medicine.

Patient participation.

Physical Description:

1 online resource (278 pages)

Edition:

First edition.

Place of Publication:

[Place of publication not identified] : Ethics International Press Ltd, [2024]

Summary:

Patient and Public Involvement (PPI) involves working in collaboration or partnership with patients, carers, families, service users, or the public, in planning, designing, managing, conducting, disseminating, and translating research. PPI in health and clinical research has increased exponentially over the last two decades. Despite this, it is not regulated, nor are there any universally agreed standards or ethics applied to PPI in research. However, health and clinical research is a heavily regulated area and is subject to a great deal of international and national legislation, policy, procedure, and guidance. Included in this is legislation and policy relating to the safe participation of those who are the subjects of research i.e. patients, carers, families, members of the public. They are also protected from harm by research governance and research ethics processes. Academic institutions, health and care systems, and research funders, across Europe and the US encourage and mandate PPI in research, and there is a significant need to educate researchers and prospective researchers across health and care in ethical, effective, and impactful PPI. Many health and care educators offer training modules or courses on how to engage and involve patients and others in the research process. That training may also include patients as educators. This places an onus on academic institutions responsible for training health professionals, and managers to provide research training and build capacity in PPI. This handbook adds to the growing literature relating to PPI in research and provides a reference point and guidance on ethical research involving PPI. It makes an important contribution to the debate about the ethical aspects of involving patients and the public as partners in the design, conduct, and dissemination of research.

Contents:

Intro

List of Boxes, Tables and Figures

About the Editors

About the Authors

Introduction

Virginia Minogue and Jon Salsberg

References

Chapter 1 Ethical Patient and Public Involvement in Health Research

What is ethical PPI in research?

Ethical approaches to PPI

Identifying ethical issues in PPI

The ethical implications of the PPI contributor roles

Further ethical challenges

Conclusion and key messages

Chapter 2 Bridging the Gap: Moral and Ethical Issues within Patient and Public Involvement in Research - Tensions and Dilemmas

Virginia Minogue, Penny Vicary, Susan Law

Dimensions of ethical PPI in research

Values-based approaches to PPI

Tensions and dilemmas in delivering ethical PPI

PPI as an agent for change - disruptor or agitator?

Chapter 3 Ethical and Practical Considerations of Engaged Research and Patient and Public Involvement with Marginalised Groups

Chloe Green, Lora Ruth Wogu, Thilo Kroll

Context, power and voice: research with marginalised groups

Socio-historical context and Epistemic Justice

Fostering community representation without homogenisation

Intersectionality and diversity

Building trust and commitment to the relationship

Embodying core values of trustworthiness

Sharing decision-making and establishing epistemic justice

Ensuring mutual benefits

Equity, diversity, inclusion, and fair representation in research

Reimagining engaged research and PPI with marginalised communities

Community Based Participatory Research

Co-production with marginalised communities

Practicalities of inclusive PPI

Barriers and Facilitators

Inclusive PPI and Research Ethics

Time

Place and Settings.

Language and communication

Knowledge sharing and dissemination

Compensation

Personal assistance and assistive technology

Conclusion

Key Messages

Chapter 4 Partnered Research

Jon Salsberg and Alex M. McComber

Is partnered research the ethical thing to do?

Rationale for respecting communities in addition to respecting individuals

Community Ethical Review

Challenges and Solutions

Community review and approval should come first

Who represents the community?

Community representation on the research ethics committee

Creating a Partnership Agreement

Ownership and Control of Research Data and Products

Conclusion and Main Messages

Chapter 5 "That was Sexy" to "Hope for Change": Resituating an Ethics of Power in the Capacity to Aspire in Public and Patient Involved Research

Melissa Park, Keven Lee, and Orly Estein

Methods

Recruitment for participatory groups: Network and participant observations

Participatory data collection/analysis: collective narratives

Results: "That was sexy" to "hope for change"

"That weirdo moment"

"This peculiar hiccup"

Mis-calculating participation

Mistaken

Institutional misrecognition

"Dialogue about dialogue about process"

Discussion: From accountability to possibility

Power and ethics

Ethical implications of "safe enough"

Key Messages:

Chapter 6 Children and Young People and Research

Jennifer Preston, Sammy Ainsworth, Lynette Bortey, Lou Lambert, Elle Lappin, Naomi Maxwell

Background

PPI with CYP in practice - where to begin

The case studies

Case study one: Reporting Adverse Drug Reactions (ADRs) in Children

Developing a PPI plan

Identifying who to involve and how.

Case study two: Juvenile-onset systematic lupus (JSLE) - Treat-to-Target Study

Identifying who to involve and how

Discussion

Chapter 7 Ethical Considerations and the Involvement of People with Intellectual Disability as Research Contributors

Stephanie Corrigan, Ashleigh Gorman18F , Mei Lin Yap, Miriam Fitzpatrick, Philip McCallion, Mary McCarron, and Eimear McGlinchey

Transparency

Respect

Empowerment and power-sharing

Trust

Collaboration and partnership

Flexibility

Equity and inclusion

Enhancing ethical Patient and Public Involvement: a case study with the TCAID panel

Perspective from a PPI contributor with lived experience of intellectual disability

Application of ethical principles in PPI to other vulnerable populations

Chapter 8 Ethical Patient and Public Involvement - the Perspective of Research Funders

Anne Cody and Mandy Daly

Why do funders care about public and patient involvement?

Funder's perspective

PPI perspective

Levers to change researcher behaviour

PPI in funding applications

How to encourage PPI

Responsibilities of research teams

PPI in funding decisions

Outline of selection process

Public reviews

PPI members of selection panels

Challenges

Conclusions and key messages

Chapter 9 Research Ethics Committees and Patient and Public Involvement

Emma Dorris and Deirdre MacLoughlin

PPI and prior REC approval

Canada

Australia

United Kingdom

Ireland.

Stage of the research cycle, PPI, and REC Approval

When PPI contributors become data handlers

Assessing risks to PPI contributors

PPI members of Research Ethics Committees

Why get involved as a PPI contributor on a REC

Motivation

Value of PPI contributors on RECs

Reassurance for Research Participants

Active participation in RECs

How REC's can support their PPI members

Final observations from the experience of a REC member

Acknowledgements

Chapter 10 Towards a Framework for Ethical Patient and Public Involvement in Healthcare Research

Principles and values

Sharing power and decision making

Building relationships

Community and collective rights and responsibilities

Assessment and mitigation of ethical risks

Co-creation of new knowledge

Frameworks for ethical PPI

A proposed conceptual model/values-based framework for ethical PPI

Values-based conceptual framework for ethical PPI

Index.

Notes:

Description based on publisher supplied metadata and other sources.

Description based on print version record.

Includes bibliographical references and index.

ISBN:

9781804415467

1804415464

OCLC:

1467878234