Engagement & Involvement

Understanding patient and public involvement and engagement (PPIE) with the practices of animal research

Public and Patient Interfaces with Animal Research

Biomedical research is increasingly expected to be open and transparent, to translate laboratory findings into new drugs and treatments for humans and animals, and to engage with the people affected by health conditions who stand to benefit from this research. These demands have led to rapid growth in new forms of public and patient involvement and engagement (PPIE) across health and care research. These innovations are beginning to open up new interfaces between people affected by health conditions and animal research within project reviews, facility visits, and other conversations.

At the University of Exeter, our work involved attending events and talking to people working at the interfaces between PPIE and animal research to understand the range of opportunities, challenges, and questions these encounters create. We used the idea of the animal research nexus to highlight the different expectations and experiences that organisers, researchers, and participants have of these events, and to work towards enhancing their value for everyone.

We published an Interim Report from our research to share our findings with research participants in early 2019. We presented and published our work for different audiences and in academic articles, which you can explore below. In 2022, we published our report of practical next steps for Informing research involvement around animal research and devised a training workshop for researchers considering PPIE, which was part of Beth Greenhough's work on Care-full stories.

If you have further questions about our research on the interfaces between people affected by health conditions and animal research, please contact Prof Gail Davies. This work was carried out with Dr Rich Gorman and Dr Gabrielle King, who are now in new roles supporting the research involvement. Gail is continuing her work on the social and cultural aspects of animal research and its replacements.

As part of his work on the Animal Research Nexus Programme, Rich also worked on the contested conversations around replacements for endotoxin testing using horseshoe crab blood, in collaboration with the RSPCA. His work extended our analysis of how people affected by health conditions talked about the harms and benefits of animal research outside of regulatory spaces, with an exploration of how the 3Rs was being used to discuss the future of procedures using animal derived material that fall outside of ASPA. You can see the slides from our presentation at the closing conference pulling these two strands of work together to reflect on whose interests are engaged and who is involved in decision-making around animal research.

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Engagement Activities

The Animal Research Nexus team at the University of Exeter have developed a range of resources to help understand and support involvement with research for when conversations include animal research.

Publications

The paper builds on earlier an earlier blog by Ally Palmer called 'Can animals volunteer to participate in research?' We use the questions rasied by Ally to examine together the different ways that scientific researchers talk about animals' volunteering in research papers and reflect on the ethical importance of this discourse.

This book chapter is forthcoming in the book Multi-Species Dementia Studies: Towards an Interdisciplinary Approach, edited by Nick Jenkins, Anna Jack-Waugh, and Louise Ritchie, from Bristol University Press. The chapter brings work by Davies and Gorman’s on how patient representatives review research proposals that use animal models in dementia research with Richard Milne’s work on the emergence, development, and ‘calibration’ of animal models over the last 40 years of Alzheimer’s research. Bringing these projects together enables us to explore how multispecies relations are made in Alzheimer's research, and how people affected by dementia are placed in several ways through these processes, only some of which they are aware of and thus able to affect.

This article emerges out of the work of the The Swiss National Research Programme “Advancing 3R” (NRP 79). It features contributions from AnNex team member and NRP Steering Committee member Professor Gail Davies. The paper embodies and develops many of the aspirations of the AnNex programme in stating that: "Looking at the debate on advancing 3Rs from this angle, the humanities and social sciences are not the fifth wheel: they are as important as natural science and biomedicine in the project of advancing implementation of the 3Rs and developing the 3Rs themselves."

This book features highlights from the Animal Research Nexus Programme to demonstrates how the humanities and social sciences can contribute to understanding what is created through animal procedures - including constitutional forms of research governance, different institutional cultures of care, the professional careers of scientists and veterinarians, collaborations with patients and publics, and research animals, specially bred for experiments or surplus to requirements.

Developing the idea of the animal research nexus, this book explores how connections and disconnections are made between these different elements, how these have reshaped each other historically, and how they configure the current practice and policy of UK animal research.

This report contributes to a growing body of advice around how to involve people affected by health conditions in laboratory or biomedical research. It draws on work completed as part of the Animal Research Nexus Programme (2017-2023) and brings together our findings with resources to help people who might be involved in conversations around the use of animals in laboratory research in the UK.

The increasingly global scope of biomedical research and testing using animals is generating disagreement over the best way to regulate laboratory animal science and care. Despite many common aims, the practices through which political and epistemic authority are allocated in the regulations around animal research varies internationally. This article proposes a framework for understanding and thinking across national differences in the regulation of animal research.

The application of genome editing to animal research connects to a wide variety of policy concerns and public conversations. In this paper, we explore three key roles that publics are playing in the development of genome editing techniques applied to animals in biomedical research: as publics, as populations, and as participants.

Endotoxin testing is a vital part of quality and safety control in pharmaceutical production. The primary method for this testing in North America and Europe is the limulus amebocyte lysate (LAL) test, a critical component of which is the blood of Atlantic horseshoe crabs (Limulus polyphemus). Procuring blood for LAL testing involves capturing and bleeding over 500,000 crabs from wild marine populations each year. Whilst efforts are made by manufacturers to return crabs to the sea following the collection of blood, there is a level of mortality and sub-lethal impact involved, prompting increasing discussions about welfare and ethics. The 3Rs – the ambition to where possible, replace, reduce, and refine the use of animals – are established and accepted worldwide as the best framework for governing animal-dependent science. However, the biomedical utilization of horseshoe crabs to produce the LAL test has rarely been viewed through a 3Rs framework. More recently, there has been a renewed attention on sustainable methods and alternatives to the LAL test. Drawing on in-depth qualitative interviews, this article examines stakeholder perspectives on opportunities for thinking with the 3Rs, considering current appetites to replace, refine, and reduce contemporary biomedical reliance on horseshoe crabs. The shape of conversations about the biomedical utilization of horseshoe crabs has shifted significantly in recent years, and the 3Rs are an important driver of change, offering the potential to advance the use of more sustainable methods, and realize the welfare considerations increasingly expected across science and society.

Rich Gorman’s secondment to the RSPCA explored the social relations shaping the use of horseshoe crab blood within pharmaceutical endotoxin testing. This involved 13 stakeholder interviews, and has resulted in a stakeholder report alongside a peer-reviewed journal publication. Rich has also presented the research at industry conferences and academic seminars. This is the report and infographic produced for his research.

A good culture of care, empowering individuals within organisations to care and reflecting wider social expectations about care, is now a well-documented aspiration in managing practices of laboratory animal research and establishing priorities for patient and public health. However, there is little attention to how different institutional cultures of care interact and what happens to the accountabilities of caring roles and the entanglements of caring practices when institutional cultures meet.

Blog entry

Written by: Gail Davies

The Animal Research Nexus Programme ran its closing workshop at the end of March (2023) at the

Written by: Rich Gorman, Gabrielle King, Gail Davies

Research conducted by members of the AnNex team has highlighted the growing number of initiatives designed to engage and involve people with health conditions with the research that affects them.

Written by: Annex Admin

A lot of guidance has been written about how to actively involve patients and the public in clinical research, and evidence is growing about the value of this.

Written by: Rich Gorman

Rich Gorman’s secondment to the RSPCA explored the social relations shaping the use of horseshoe crab blood within pharmaceutical endotoxin testing.

Written by: Bentley Crudgington, Gail Davies

Vector is an interactive experience, which uses elements of performance, game, and integrated technology to open up dialogue about the ethical dilemmas of using animals as part of medical research.

Written by: Rich Gorman

The report on the US Pharmacopeia’s decision to continue relying on the blood of wild-caught horseshoe crabs for safety testing pharmaceuticals (

Written by: Rich Gorman

As part of a Wellcome Trust Secondment Fellowship with the RSPCA's Research Animals Department Dr R

Events

The Animal Research Nexus Programme is hosting a conference entitled 'Researching Animal Research' on 30th – 31st of March at the Wellcome Collection in London.

We are holding a workshop in April 2019 to bring together scientists and stakeholders to progress practices that will enable people to have more comfortable and productive conversations about animal research within the context of patient and publi

Announcements

Are you interested in what conversations with patients or carers might offer your research? Or do you think patient involvement with biomedical research is not a current priority?

Project partners

The Medical Research Council’s Mary Lyon Centre (MLC) is located on the Harwell Campus, Oxfordshire.

The Medical Research Council Brain Network Dynamics Unit at the University of Oxford opened in April 2015.