Patient involvement in arthritis research 

Support to involve, engage and recruit people with arthritis in research

We want people from diverse backgrounds with lived experience of arthritis to be participants, active partners and leaders in research. We're here to support and guide researchers from academia and industry to do this effectively.

Involvement: Patient involvement (PPI) in arthritis research

Patient and public involvement (PPI) refers to a person with lived experience of arthritis, acting as active partners in research. For example, people with arthritis are involved in setting research priorities and steering the direction of research.

Find out more about involvement
Participation: Find people to participate in your research

Patient participation refers to people being recruited to take part in a research study as participants, for example, people with arthritis as subjects in a clinical study.

Find people to participate
Engagement: Effective dissemination of your results

Patient engagement is where information and knowledge about research is shared, for example, people with arthritis attending an open day or research seminar.

Effective dissemination

Professor Lucy Donaldson, Director of Research at Arthritis UK

PPI support

Complete this form and send it to us if you would like to access our lived experience voices/network or to discuss your plans with us first get in touch at researchinvolvement@arthritis-uk.org 

We also support Your Rheum, a UK-wide young persons advisory group for people aged 11-24 years, who have volunteered to provide their thoughts, ideas and opinions on all stages of adolescent and young adult rheumatology research. The group and how to partner with them.

PPI support for academic researchers

We can share your opportunities to shape research with our research partner network (people with lived experience interested in research involvement).

If you are an Arthritis UK-funded researcher and you would like support and advice on delivering your involvement activities, we’d be happy to help. For those not funded by us, if you’dlike to work in partnership on a project, we’d be happy to explore how we could support, advise and deliver PPI activities with you.

PPI support for industry

We can support you in several ways to deliver your research involvement activities, for example:

  • Promoting opportunities to shape research through our research partner network.
  • Support and advice on your approach and activity.
  • Working in partnership, including the delivery of PPI activities.

You may also be interested in seeing our wider corporate partnerships offer.

Support to recruit of research participants

If you are an Arthritis UK-funded researcher and you would like support to recruit, please get in touch with our Research Liaison team.

We do not directly facilitate recruitment to projects beyond our portfolio. We encourage researchers beyond our portfolio to ensure their projects are listed on the Be Part of Research platform.

We work very closely with the NIHR to signpost people with arthritis in our networks to sign up to Be Part of Research. People with arthritis can search all of the arthritis projects directly from this page on our website - Find a research study to take part in. This is the best way to access our research-ready networks of people with arthritis.

Support with your engagement or dissemination

Please come and talk to us about your research results and your plans for sharing your research findings with people with lived experience of arthritis, health professionals and researchers. Our Research Liaison team will be happy to discuss your results and how we can support your dissemination. Get in touch.

Cost-recovery

When working in partnership with industry or providing more significant input on academic projects, we will seek to ensure that our costs are recovered in line with the Fair Market Value for Charities in Partnership Work report.

The PPIE support we offer research teams

The involvement support we offer researchers

If you are an Arthritis UK-funded researcher and you would like support and advice on delivering your involvement activities, we’d be happy to help. For those not funded by us, if you’d like to work in partnership on a project, we’d be happy to explore how we could support, advise and deliver PPI activities with you.

Involvement support and resources
Getting started with PPIE

Getting started with Patient and Public Involvement

It can sometimes be hard to know where to start with Patient and Public Involvement (PPI), so we have created a simple guide that includes how to develop your research involvement PPI knowledge, plan your approach and method, reach out to people with lived experience of arthritis and ask for help.

Getting started with patient involvement
Diversity and inclusion of PPIE groups

Diversity and inclusion in PPIE

Inclusivity is central to our work at Arthritis UK. We strive to include people from a range of diverse cultures, ages, geographies, disabilities and ethnicities in our work. Find out how you can do the same when planning your research. 

Diversity and inclusion in PPIE

PPIE case studies

PROP OA: effectiveness of knee braces in managing osteoarthritis

The PROP OA randomised control trial set in primary care and the community aimed to determine the clinical and cost-effectiveness of knee braces in the management of osteoarthritis, and included PPIE in all stages of their work.

PROP OA knee brace trial
Alleviate Pain Data Hub developed with with Health Data Research UK

How Alleviate created an online, safe platform for researchers to access pain-related data, working with Health Data Research UK (HDR UK), to better tackle the challenges in understanding the complexity and unpredictability of pain. 

Alleviate Pain Data Hub
SenseCheQ testing chemotherapy induced peripheral neuropathy

The Advance Pain Discovery Platform project, SenseCheQ, conducted community-based sensory testing for early identification of Chemotherapy Induced Peripheral Neuropathy, and weaved PPIE through all parts of the research cycle.

SenseCheQ sensory testing

Terminology

A reflective note about the terminology used throughout:

There are many different preferred terms that people use when co-creating together with people living with arthritis. We use the terms 'Research Partner' and 'Patient Partner' interchangeably.

Equally, we interchange 'subject' and participant'. It can be valuable in PPIE partnerships to discuss and agree which terms your research partners would prefer to use, as different groups prefer different terms.

Fundamentals of PPIE