Patient involvement in arthritis research
Arthritis Research PPI
Patient involvement refers to a person living with arthritis, or their partner, family member or carer acting as active partners and leaders in research activities.
Patient involvement can take many forms, such as co-producing patient information booklets, facilitating project workshops and contributing to project presentations, all of which are valuable at different stages of your project. Good practice is to 'do with' and work in partnership. For example, asking people to review plans or communications, is important, but better still, you might work jointly and produce shared plans and objectives from the outset.
Arthritis UK's involvement expectations
Are you an Arthritis UK researcher, or thinking of applying to us for funding?
Look at the overview of PPI standards and guidelines for arthritis researchers
Read our position on Patient and Public Involvement (PPI) in research
Involvement across the research cycle
Research involvement should happen at every stage of the research cycle, in all types of research projects. You can look at tips, resources and case studies to involve people at each stage of your study through the pages below.
Engage with individuals who have lived experience of arthritis to shape impactful research and prioritise unmet needs effectively.
Collaborate with individuals who have lived experience in your project design and funding applications to refine your approach.
Discover effective strategies for collaboration in your research journey, as well as monitoring and enhancing project outcomes.
Involving people with lived experience in the dissemination of your research can add weight and insight to the project.
What difference does involvement make?
- Research is more relevant to the needs and preferences of the people it intends to benefit.
- Research is of higher quality - better designed, more acceptable to participants and more clearly explained.
- Research is more impactful and focussed on moving towards real-world improvements.
- Researchers feel more motivated and focused on what's important to people with arthritis.
- As a researcher, you will build skills in things like communication and facilitation, and confidence alongside this.
- PPI members report feeling listened to, empowered and better connected to their peers. Learning about arthritis, research and new skills- themselves.
Fundamentals of PPIE
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Checklist for planning your involvement
Developing an involvement plan before you begin will maximise the benefit of your activities and ensure that they are suitable and accessible for people with arthritis.
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Involvement In Research Planning Template For Researchers
This document aims to support you to plan and consider how to involve people with arthritis in your research project or programme.
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Diversity and inclusion of PPIE groups
How to improve the accessibility of your PPI and the diversity of voices in PPI partnerships by proactively seeking out communities who are underrepresented.
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Communicating in lay language
Learn how to engage diverse audiences with clear accessible language and compelling narratives.
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Research involvement request form
Complete this form if you would like to access our lived experience voices/network to co-produce your research, get in touch whether you are funded by us or not, from industry or academia, we are here to help.
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Arthritis UK good practice guidelines
Working in partnership with people who have lived experience of arthritis, we have developed our Arthritis UK Good Practice Guidelines for Involvement to share our expectations with our colleagues, health professionals and researchers.
Working with people with lived experience of arthritis can bring benefits to all types of research, including research based in the lab.
We know that PPI in lab-based research comes with additional challenges, but it is possible to involve people with arthritis meaningfully throughout. This page provides tips, resources, support and case studies for lab-based researchers.
New to PPI?
Develop your knowledge
- Look at our good practice guidelines
- Take this Imperial College London PPI course
- Review EULAR’s Education modules and webinars
- The Canadian Institute of Health Research have several training modules, including a video discussing six reasons to include patients in research.
- The University of Aberdeen's iPRePaRe study has developed recommendations and frameworks for working with patient research partners in arthritis research. Watch their video of recommendations.
Plan your PPI
Start to outline a plan for why, how and when you’d like to involve people with lived experience of arthritis – it doesn’t need to be finished, as once you start you can discuss and finalise this plan with them.
Use our PPI planning template alongside our checklist to help structure your planning and ensure you don’t miss anything.
What to consider before reaching out to people with arthritis
If you haven’t done PPI before, don’t be afraid to start small – arrange a meeting, invite people to attend your lab or give feedback on public-facing material.
The number of people to involve will vary depending on the activity you are planning. For example, one or two people attending oversight/steering meetings or being a co-applicant. As opposed to a larger group reviewing grant information or taking part in discussions around research priorities. Here it is useful to collect a more diverse range of opinions and feedback.
Other key elements to consider:
- How are you going to keep people’s data safe and protect their privacy? Here's some information to get you started thinking about this.
- Exploring reward and recognition, e.g. payment for people's time (read more about costing your PPIE), or having their name on a research paper.
- Reasonable adjustments and removing barriers, e.g. holding your meeting at a time that allows people adequate time to travel. Here’s some advice on making activities and events accessible and a template for work adjustments for people with arthritis that could be adapted or ideas used in your activity.
Where you can access support/people with arthritis
There’s lots of help available either for planning your PPI or to access people to ask them to become your PPI members:
- Your colleagues – have they done PPI before? Do they see people with lived experience in clinic who they could ask?
- Your university – often there will be central support and guidance around PPI, or even dedicated staff to support you. Are there any existing PPI groups you can access?
- NIHR Research Support Service - provides free, expert advice and support on the design and delivery of research and the development of research funding applications, including PPI.
- Arthritis UK - we can put you in touch with our community of research partners; complete this form and send it to us if this would be useful. Contact our research involvement team if you need any additional support or advice on your PPI.
- Your local community - community groups, small local charities, GP surgeries, or social media are all examples of ways you can reach people near you.