Patient and public involvement in animal research
Myself and Anne, a research volunteer, reflect on a recent workshop we attended to discuss how patients and the public can be involved in animal research.
The use of animals in scientific research is critical for the development of new treatments. Drugs discovered in the lab must be tested on animals so researchers can check they are safe and get a better understanding of how they work before they are given to humans. The use of animals in research raises a number of ethical, societal and cultural considerations. As patient and public involvement starts to become embedded into the research process these considerations have an impact on how patients and the public interact with animal research.
The Wellcome Trust funded Animal Research Nexus project aims to bring together scientists, stakeholders and the public to discuss the historical and social relations around animal research, and to understand some of the challenges emerging in this field.
A specific strand of the project is exploring patient and public involvement/engagement in animal research, seeking to better understand the opportunities and challenges in this area of research. This work is being led by Professor Gail Davies and Dr Rich Gorman at Exeter University.
Gail and Rich have been speaking with researchers, lay contributors (patients and the public) and research professionals (research funders, medical research charities) about their experience of patient and public involvement in animal research. An interim report of their findings can be found here.
A follow-up workshop was hosted in April this year to discuss the findings from the report and identify areas to develop new conversations.
For me, the workshop highlighted several key areas of focus including:
- the importance of defining objectives when it comes to patient and public involvement (PPI) in animal research
- improving understanding of what animal models are and how they are used
- a key role for PPI in helping improve how findings translate from animal research to research in humans
At Parkinson’s UK, we support researchers and people affected by Parkinson’s to work together through our patient and public involvement programme. People affected by Parkinson’s help researchers plan, design, manage, evaluate and disseminate research, helping to ensure that research is focused on what matters most to those living with the condition.
Our research volunteers also review the grant applications we receive and help us decide what research to fund.
Find out more about animal research in Parkinson’s UK funded studies:
People affected by Parkinson’s are encountering animal research through these activities, and so the workshop made us think about how we can best support researchers and people affected by Parkinson’s to work together in this space. We want to ensure that PPI is meaningful for all involved, and we want to support people to have open conversations about animal research, recognising the challenges and considerations.
One of our Parkinson’s UK research volunteers, Anne, also attended the April workshop. Below she shares an outline of the day and her reflections on the conversations.
I was pleased to be able to attend the workshop with Natasha (Parkinson’s UK) and looked forward to a thought-provoking day.
Initially it was a little intimidating: everyone introduced themselves and all but 4 people (out of around 30) were professionals in their fields. Then I realised that I am a professional in my field too. I have the lived experience of caring for someone with Parkinson’s, and I have experience as a lay grant reviewer and patient and public involvement volunteer, reviewing grant applications and working with researchers to shape their work. I also bring knowledge from my work life. I work with children with special needs. A lot of my work is based around making connections between what I see and read and being objective about it. I have to analyse information to make informed decisions about how to progress and I also write reports in Plain English.
The morning was really interesting and included talks on three topics: supporting PPI in animal research, translating findings from animal research to humans, and the morals and ethics of using animals in research. Lots of information to absorb!
It was a privilege to listen to Natasha talking, and I was proud to feel part of an organisation that works hard to ensure that PPI happens across the board. And that the voice of the people affected by Parkinson’s is heard, acted upon and valued by Parkinson’s UK.
After lunch we had guided group discussions about key topics that were identified in the interim report. The buzz of conversation in the room showed that people had lots to say!
As I left the workshop, my main thought was that there needs to be more open conversation about research. But because some topics are difficult, many people choose to avoid the conversations. It made me think of the current advertising slogan “we need to use the M Word and talk about money”.
We need to have a greater openness and discussion about animal research.
Many people rely on drugs and treatments that have only come about because of the use of animals in one stage of the long process of drug development. It has to be part of the research process, but we need to get it right. As a lay member who does reviews and is a PPI volunteer, I want to be better informed so that my decisions and reviews are based on a greater knowledge, not just a ‘gut feeling’.
Researchers need to recognise the value of the thoughts, opinions and ideas of the people for whom they are ultimately doing their research.
They should not assume that our opinion is not of value on this topic, or that we are not able to discuss this topic objectively. I was almost offended to hear that one project in the UK had decided to exclude discussion on the animal issue from their public engagement session!
The need for openness and sharing between researchers and lay people is not just confined to work that includes animal research.
The same principles apply to all kinds of research. It needs to be relevant and ethical. The contributions that lay people can make must be incorporated into research in general. The value of the lay voice and the contributions that they can make through patient and public involvement/engagement should be a higher priority for researchers.
It was suggested that some researchers may ask the question “what is in it for me?” If the Animal Nexus Research project can help positively answer that question, then PPI will become a driver of research. When researchers grasp that PPI helps ensure relevance of their work, improves their research proposals, and may also contribute to securing funding, they will find that the answer to their question is “a lot!”
Anne Ferrett, PPI volunteer and lay reviewer for Parkinson’s UK
Rich, from the Animal Research Nexus, comments:
“Our work on the Animal Research Nexus Project at the University of Exeter has involved interviewing people affected by different health conditions about their experiences of being involved in research, research scientists who had experience of, or were seeking opportunities for, patient and public involvement/engagement in their research, as well as professionals involved in funding research or supporting research involvement and engagement. The workshop was a great opportunity to bring these perspectives together.
“We are grateful to everyone who came and shared their experiences and made the workshop a success. We are particularly pleased to hear Anne’s comments about wanting greater openness and more discussion about animal research, which certainly resonates with our research findings to date. It also mirrors the experiences of others who attended.
“We will be using the reflections gathered at the workshop to develop guidance and resources to enable meaningful conversations about research that uses animals with patients, families, and carers.”
Dr Rich Gorman, Postdoctoral Research Fellow, Animal Research Nexus project, University of Exeter
Find out more
Stay up to date with the Animal Research Nexus project: animalresearchnexus.org/
Read the full Parkinson’s UK policy statement on the use of animals in research.
For general information and resources about the use of animals in medical research: Understanding Animal Research
