PAINSTORM’s approach to patient and public involvement and engagement (PPIE) was to actively involve patient partners from the earliest stages of the project. We invited four people with lived experience of neuropathic pain and skills in a broad range of domains: Jo Josh (communications expert with the British HIV Association), Lynn Laidlaw (patient and public contributor and patient researcher), Gordon Liddle (specialist in the collaboration between the Arts and Science and the therapeutic use of arts in mental health for vulnerable adults), and Fiona Talkington (broadcaster, writer, and speaker). They contributed to drafting the grant application and formulating the research plan for PAINSTORM. Jo, Gordon, and Fiona remained involved throughout the duration of the project.
Some events we organised
Expressions of Pain
While everyone has experienced pain at some point in their life, not all pain is experienced the same way. Sometimes pain comes and goes, sometimes pain stays and never leaves. Pain has been expressed creatively in many different ways but how can we best communicate it? How can people living with pain find the best way to describe their own experience, so that they can help others understand what they are going through?
"Expressions of Pain" is a workshop where pain meets art and art meets pain. In this interactive workshop, the aim is to make the invisible, visible and we will do this by using different media to illustrate pain.
This British Science Week event, funded by the Wellcome Trust and the University of Aberdeen ISSF Fund, is an Advanced Pain Discovery Platform PAINSTORM consortium collaboration between people living with pain, researchers from the Universities of Aberdeen and Dundee, and artists from Duncan of Jordanstone College of Art and Design, Dundee.
A second event on “Using the Arts to Enhance Patient and Public Involvement in Research” took place in March 2025 in Stirling.
NeuPSIG workshop
If you attended the 2023 Congress on Neuropathic Pain in Lisbon this September, you might have come across our workshop "Patient Lived Experience: Adding Value to Neuropathic Pain Research". This interactive session focused on three areas of Patient & Public Involvement (PPI) in pain research:
(1) what PPI is, what it is not, why it is essential, and how to build PPI confidence and capacity;
(2) a case study of the importance and impact of PPI in the PAINSTORM consortium including practical tips and resources to support PPI and its evaluation; and
(3) the lived experience perspective of being involved in pain research, education, publishing, and pushing forward ground-breaking initiatives through IASP's Global Alliance of Partners for Pain Advocacy (GAPPA).
The Puzzle of Pain
In an exciting day hosted by Pain Research Reading in association with PAINSTORM, the mysteries of pain were unravelled through talks, hands-on demos, workshops, interviews and art installations.
Guests also got to be part of the audience for a live recording of the PAINSTORM podcast - PAINCAST - hosted by BBC Radio 3's Fiona Talkington in the Great Hall. The panel included Professor Andrew Rice, President of the IASP, and Professor David Bennett Professor of Neurology and Neurobiology at the University of Oxford.
Pain Research Reading is a group of academics, clinicians and patients that work in collaboration to develop our understanding of pain through research. They lead projects and disseminate findings to improve the experiences of those living with pain.
How we implemented public and patient involvement
Working with patients, charities, and communities
We worked with patient charities and organisations such as Pain Concern, Maggie’s Centres, and the Global Alliance of Partners for Pain Advocacy (GAPPA).
We formed a Patient Advisory Group and invited Joletta Belton from GAPPA to join the PAINSTORM Scientific Advisory Group. These two groups shared invaluable feedback on PAINSTORM activities and progress. The Patient Advisory Group and the Patient Partners shaped the protocols, recruitment strategies, and participant-related materials for work packages 1, 2 and 3. This has ensured that the data gathered from participants is patient-centred, relates to their lived experience, and offers diverse perspectives.
We organised “Lunch and Learn” sessions in 2025 for community members and non-academics who wanted to learn more about research, which was available to all across the APDP. Themes included: practicing critical thinking; an introduction to health data science; evaluating research proposals; and finding and reading research articles.
Fiona Talkington and PAINSTORM researchers have received funding from the Schwarzman Centre to commission an Iain Chambers’ composition piece based on the quantitative sensory testing (QST) audio recordings from A. Themistocleous.
PAINSTORM featured in the May 2022 PAIN MATTERS magazine put out by Pain Concern, with several researchers and patient partners contributing to articles.
Working with researchers
We continuously shared input from PPIE with the PAINSTORM group and gathered feedback from them. Every meeting included a PPIE update, and a reflective exercise after the first year of the project enabled project partners to share their thoughts, concerns, and suggestions on the implementation of PPIE in PAINSTORM. Another reflective exercise will take place at the end of the project to reflect on the journey and the lessons learnt from PAINSTORM.
Fiona Talkington and Jo Josh, alongside PAINSTORM researchers, have been involved in the IASP 2026 Global Year on Neuropathic Pain, helping shape the programme, content, and online events.
We organised workshops, many interactive and arts-based, on the patient lived experience at pain research conferences, such as the 2024 IASP World Congress, and the 2023 & 2025 NeuPSIG Congresses, and the Australian/New Zealand College of Anaesthetist ASM. Themes included: patient involvement in neuropathic pain research, building trust in pain research, pain and trauma, and empowering patients in chemotherapy-induced neuropathy research, and improving management of neuropathic pain. We also took part in local events such as the 2025 Scottish Pain Research Community annual meeting, where Gordon Liddle gave a powerful account of being a patient partner within PAINSTORM and discussed his involvement in qualitative analysis.
