PPIE for lab-based researchers

Working with people with lived experience of arthritis can bring real benefits to all types of research, including research based in the lab. This is why we expect to see involvement across all our funded projects.

We have heard from our lab-based researchers that involving people with arthritis in discovery research can be challenging to implement, with often no direct contact with people with lived experience. However, it is possible to involve people with arthritis meaningfully throughout the discovery science research cycle and we hope this page will help you to do this.

Involving people from the very beginning of your research ensures that the research is accountable. It can focus you and your team, bring clarity to the areas that will benefit people with arthritis. It is also a way to demonstrate the importance of discovery science.

Involvement can continue through and beyond, project completion. Ideally, involvement happens at all stages of the research cycle, however, any of the below activities can also be meaningful in isolation, and a good place to start and build from. It’s important that you tailor your approach to your project.

Start by working out what you want to achieve.

By doing this you can then work out who to involve, how and when to involve them. Aims of involving people with arthritis could be:

• To decide research areas to focus on
• Help define the outcome measures or important outcomes of your project
• Have people with lived experience advocate for the importance of this area of lab-based research
• Help you to communicate your research
• To build you and your team’s understanding of what living with arthritis is like
• Inform the development of your lay summary or plain English description of your project

Versus Arthritis can help by linking you to our research partners, who are people with lived experience of arthritis. Complete this form and send it to us if this would be useful.

Our Getting Started page and advice on diversifying your PPIE group is also there to help.

• Guide to involvement in lab-based research - a clear guide on many aspects of PPIE for lab-based researchers. This guidance has been co-produced by staff, patients, public and researchers. The how to plan and budget for PPIE sections, and the case studies are useful.
• Early-Discovery.pdf (pemsuite.org) Section 1 is a how-to guide for patient engagement in the early discovery and preclinical phases, it also includes a helpful section (from page 14) on managing expectations when working with patients.
• Can patients be involved in preclinical research? - BMJ Open Science. This includes a helpful case study from a lab-based scientist, as well as ideas on how to incorporate PPIE into your work in the “Where Next?” section.
• Finding and engaging patients and the public to work collaboratively on an acute infection microbiology research public panel | Research Involvement and Engagement | Full Text (biomedcentral.com)
• Patient involvement in basic rheumatology research at Nijmegen: a three year’s responsive evaluation of added value, pitfalls and conditions for success | BMC Rheumatology (springer.com) - the results section offers insight into understanding the barriers that research partners may feel when involved in lab-based work, and how facilitators can overcome these.
• Diabetes UK have helpful guidelines on writing a good lay summary with useful examples: Writing a grant application | Diabetes UK

Below are some helpful documents that discuss patient and public involvement in animal research.

• Transparency and Public Involvement in Animal Research - Pandora Pound, Ricardo Blaug, 2016 (sagepub.com)
• Informing Involvement Animal Research Nexus Report.pdf (southampton.ac.uk). Page 21 advises on how you can start to engage people with your research and support you may be able to seek.
• Understanding Animal Research provides helpful information, examples and resources for animal research, including the new Biomedical and Animal Research News Digest.