The Pain at Work Toolkit

Self-management tools for people with chronic or persistent pain tend to focus on symptom reporting, treatment programmes or exercise and do not address barriers to work, facilitators of work ability, or workplace pain self-management strategies. In response to this, we developed the Pain-at-Work (PAW) toolkit which provides (a) evidence-based guidelines and signposting around work-capacity advice and support; (b) self-management strategies around working with chronic or persistent pain, (c) promotion of healthy lifestyles, and quality of life at work; (d) advice on adjustments to working environments and workplace solutions to facilitate work participation. 

The toolkit was co-created with input from 472 people including healthcare professionals, employers and people living with chronic or persistent pain. This included a stakeholder consultation event (n=27), an online survey with people who have chronic pain (n=274), an online employer survey (n=107) and an expert peer review panel which included people with lived experience (n=40). This process helped us to design the content, presentation and delivery approach for the toolkit, which we updated and refined through a group concept mapping exercise with input from our PPIE partner, Victoria Abbott-Fleming (Chair of the Patient Voices Committee, British Pain Society).

The feasibility and acceptability of the PAW Toolkit to employees and employers is now being tested in a cluster-randomised workplace trial, funded by the Nuffield Foundation and Versus Arthritis. PPIE is embedded at every stage of the research from development, to testing in a trial, dissemination, and informing future research. Our PPIE partner sits on our Pain-at-Work Trial Management Group and provides advice to the study team, and our Trial Advisory Board includes people with lived experience of chronic pain who review and guide us on our trial processes, research materials, dissemination and communication plans. The PPIE input in this programme of research goes beyond the immediate project and helped us to determine the key advantages and challenges of web-based interventions for training and health behaviour change. We used this knowledge (alongside that gathered in other web-based workforce studies) to develop the WWHIDE Framework: “A Web-based Workforce Health Intervention Development and Evaluation Framework”. This is the first framework to present key considerations around the recruitment of employers and employees, intervention design and development, delivery modality, comparison groups for trials, intervention engagement, attrition rates, and user acceptance. Insights from our PPIE partners and contributors will therefore inform the design of future health research studies involving web-based interventions for education, training, and behaviour change.

We established a close working relationship with a pain charity and the British Pain Society Patient Voice Committee at the earliest stage of the research, to work with us on the development and evaluation of the toolkit. We have also invited members of the public who have chronic or persistent pain to contribute their views through surveys conducted via social media. We have involved PwA in the design of our research materials through the PPIE groups at Nottingham Pain Centre Versus Arthritis and the Versus Arthritis/Medical Research Council Centre for Musculoskeletal Health and Work in Aberdeen.

Our public contributors involved via the pain charity were able to access support from our PPIE partner on the project, who has a leadership role in this charity and prior experience of being involved in research (peer-to-peer mentoring if required). Our PPIE partner on the project management team is supported directly by the project lead, and the project researcher. This person has actively been involved in sharing her experiences of PPIE in research through the Nottingham Pain Centre Versus Arthritis. We named two members of our team as PPIE leads (academic) who would help to facilitate the involvement of PwA in our study through the Versus Arthritis funded centres, and they were able to discuss any concerns they had or project-related issues with them. The time of PPIE contributors was appropriately costed using INVOLVE guidance.

The idea for the project came from a discussion with people who have chronic pain who felt that there was not enough support for people like them in their place of work, to help them manage their condition and enjoy a good quality working life. We talked about different solutions and the concept of a digital toolkit emerged. We designed the content through a stakeholder consultation involving discussion and activities, where people shared their views about the type of content they would value, and what format they would prefer it in. We talked to PPIE contributors about our study plans and what would work well, or less well, in their view. We also received some great suggestions about how to motivate people to take part in the research and engage with the toolkit. All our project materials were reviewed by PPIE contributors to ensure that the language was accessible, and that the information was relevant. Our PPIE partner has been particularly helpful in supporting us to reach members of the public with our study information.

This project would not have been possible without PPIE input from the outset, it was vital to the success of the project, and importantly, the value of the toolkit in the real world. To produce a resource that is accessible and relevant to PwA (and others with chronic or persistent pain) requires partnership working and co-creation. The aim of the toolkit is to equip people who have pain with the knowledge, skills and confidence to effectively self-manage a painful condition at work, access help and support, enjoy a better work experience, and remain in the workforce. We will be able to provide more details about the acceptability of the toolkit, people’s views towards it, and how people used it in the context of work, when our trial ends in November 2025.

We hope that involving PPIE contributors in our research will have benefits for them, as well as for research recipients. Our PPIE partner, Victoria, shared her experiences of being involved in research at the Nottingham Biomedical Research Centre Musculoskeletal Virtual Conference on Friday 25^th February 2022 (available on YouTube, PPIE Session, appearing 2:35:40).

Value the input from PPIE contributors above all. PPIE contributors should be involved in all aspects of your research from inception to dissemination. Building relationships with PPIE contributors over time can really help to ensuring everyone feels confident to share their views in meetings. PPIE contributions lead to better decision-making, better-quality research, and ensures that supportive interventions are more relevant to the people they are for. It is important to make sure that you appropriately cost for this PPIE input in your grant applications to ensure you can work with PPIE contributors in a meaningful way.

The COVID-19 pandemic happened in-between developing the toolkit and evaluating it which meant that all our face-to-face PPIE activity moved online. We thought that the lack of face-to-face contact might be challenging, but it worked very well and in fact, made our meetings more accessible to PPIE contributors. There are key benefits of this approach in terms of lower costs, lower impacts on people’s time, greater flexibility, and less travel for PPIE contributors which can be important for those living with chronic pain and means that our study has a low environmental impact.