Involvement resources for researchers

Training and support

Patient involvement and communication workshop

We've developed a patient and public involvement training workshop in collaboration with other medical research charities within the Shared Learning Group on Involvement in Research, as well as our patient insight partners.

This interactive workshop, which is co-delivered by members of our research team and patient insight partners, equips researchers with:

  • An understanding of the value of involving patients and the public in research
  • ability to differentiate between involvement, engagement and participation
  • key principles to consider before/during/after involvement activities
  • tips and considerations for communicating with a non-technical audience.

Feedback from past attendees

"As a laboratory-based researcher I was unsure how I could find a way to involve patients and the public in my work. The PPI course made me think more broadly about this and demonstrated the value that it could add to my research." Dr Amy Naylor, Research Fellow, Institute of Inflammation and Ageing, University of Birmingham

"The workshop was excellent in suggesting ways forward for us to involve both patients and the wider public." Professor Peter McNaughton, Professor of Pharmacology, King’s College London

Upcoming workshops

The next workshops will take place as follows:

  • Wednesday 16 May 2018 – London
  • Wednesday 10 October 2018 – London

To book a place at an upcoming workshop, please contact the research involvement team on patientinsight@arthritisresearchuk.org.

Support and advice

The research involvement team have experience in advising many different researchers and organisations on how to involve patients and the public in research, from laboratory-based researchers to clinical trial teams within industry. If you would like to discuss your approach to PPI, please contact the research involvement team on patientinsight@arthritisresearchuk.org.

"Versus Arthritis have been supportive of our efforts to establish a new patient involvement group, and will be consulting on our approach to ensure that the activity fits with the charity’s strategy and vision of patient involvement, and that the activity is beneficial to our research." Dr Gareth Jones, Versus Arthritis Career Development Fellow, Cardiff University

Research involvement handbook

Our long-term commitment is to prevent and cure arthritis, and to transform the lives of people with arthritis. To achieve this, the research we fund must be addressing genuine unmet patient needs. The only way to ensure that the research we fund is relevant is to actively involve people with arthritis in our research activities, from setting research priorities to evaluating the outcomes of research projects.

Our patient involvement activities, and those of our funded researchers, should be purpose-driven and conducted in a meaningful and non-tokenistic way. This will ensure that these initiatives are valuable to researchers, the charity, and above all, to people with arthritis.

We have developed a patient and public involvement handbook for researchers (PDF 8.2 MB), which aims to support you to integrate PPI into your work so that it enhances your research.

The handbook contains information on:

  • Why you should involve people with arthritis in your research
  • guidance for basic science researchers
  • guidance for clinical researchers
  • top tips on how to meaningfully involve people with arthritis
  • case studies
  • useful resources

For more information please see our patient and public involvement handbook for researchers (PDF 8.2 MB) or contact the research involvement team at patientinsight@arthritisresearchuk.org.

How our Centre for Adolescent Rheumatology involved people with arthritis

Exploring pain, fatigue, mood and illness perceptions in young adults with juvenile idiopathic arthritis (JIA)

This project was initiated due to young people continually highlighting the need for more research into psychological aspects, pain and fatigue associated with their arthritis. It was therefore designed to explore these areas to meet patients’ needs and to fill this gap.

The project was discussed with a group of young people with JIA aged 17–24. One young person stated that the project represented their arthritis very well and made them feel that someone understood exactly how they felt in their everyday life, by proposing to research these areas. Another liked that illness perceptions were being investigated as they felt acceptance and control of illness have an impact on mood, pain and fatigue.

The consent form and information sheet were reviewed by young people, who suggested changes to improve the clarity of language throughout, including clarification that interviews/ focus groups are optional and separate, stating the number of questionnaires to be completed and condensing the content of the consent form to look less intimidating.

All the suggested changes were incorporated into the current versions pre-ethical approval. The project evolved through various stages of involvement and engagement with young people with JIA.

Developing a benchmarking tool for evaluating quality of service for young people in rheumatology

A group of young people from around the country participated in one-to-one interviews and focus groups to help develop the toolkit for healthcare professionals (HCPs) to measure the quality of care in young people rheumatology since July 2015. Young people were involved in prioritising service criteria and deciding how they should be defined and measured. This allowed more relevant information to be included in the toolkit and provided more insight of why young people valued certain criteria over others, which would not have been possible to obtain from the literature alone.

The HCP toolkit was evaluated by a group of young people, who helped further shape the research by suggesting the development of an additional toolkit for young people, to help answer more subjective areas of service provision.

Next steps are for toolkit to be used to benchmark services across the UK and an Versus Arthritis health services research grant has been leveraged to validate this toolkit.