CRIISP Consortium to Research Consortium to Research Individual, Interpersonal and Social Influences in Pain
Tell us about your project
The Consortium to Research Individual, Interpersonal and Social Influences in Pain (CRIISP) was a 4-year research collaboration across UK universities investigating the psychosocial aspects of chronic pain; supported by UKRI and Arthritis UK through the Advanced Pain Discovery Platform.
CRIISP explored how psychological factors such as thoughts and feelings, and social factors including personal relationships and lifestyle, can affect chronic pain alongside biological factors. CRIISP sought to find out which of these factors were most important, or how they combine to affect people’s experience of pain. We did this by focusing on how people think and feel about pain, how relationships with others affect their pain, and consider the wider social and environmental influences on pain.
How did you involve people?
At each stage of the project researchers were guided by the experiences of people with lived experience of chronic pain (Grieve et al 2025), beginning with the co-design of the research programme. From the outset, public involvement was embedded, with two public contributors acting as co-applicants on the grant application.
A Consortium Public Advisory Group (CPAG) was established to provide oversight of all CRIISP public involvement work under the leadership of two public contributors, the CPAG Chair and Vice Chair.
Throughout the research programme, a dedicated workstream led on public involvement (PI). The CPAG Chair and Vice Chair co-led this workstream and were members of the over-arching CRIISP governance and steering groups. The role of the PI workstream included the recruitment of public contributors to a bespoke PI network and then supporting them to work alongside CRIISP researchers in five topic areas. The public contributors worked in partnership with the researchers in a mutually respectful and productive working relationship, with lived experience meaningfully embedded in all research activity. The PI workstream established governance processes to promote the well-being of the public contributors.
We recruited 36 public contributors in total to work with researchers across five research topic areas.
How did you find people to involve in your project?
A wide-reaching recruitment strategy aimed to promote diversity of public contributors, including gender, age, ethnicity, and prior experience of PI. The opportunity was promoted via an advertisement using accessible language, and this was shared with equality organisations, women’s groups, community groups as well as pain charities, local networks and via social media. A bespoke CRIISP website was developed for the duration of the research programme and specific PI pages were incorporated. All applicants were accepted to ensure public contributors had a range of backgrounds and expertise.
How did you support people in your project?
The UK Public Involvement Standards (2019) informed this research programme. One work-package had oversight of all public contributor work within CRIISP. Within this, researchers and public contributor facilitators employed by University of West of England and Keele University provided support to public contributors. Resources were developed by the PI work-package to support the public contributors in their work for example, an induction programme and glossary of research terms. An inclusive approach addressed a range of accessibility needs, with further support from the PI work-package team as required. A public contributor only ‘de-brief’ session was held at the end of each research meeting, led by the CPAG Chair or Vice-Chair. The purpose was to gather informal feedback on each session and to support continuous improvement of the PI experience.
Public contributors received quarterly newsletters produced by the PI work-package team which included: CRIISP news, updates, public involvement-specific training and involvement opportunities. We offered support with any technology issues including the loan of equipment if needed. Annually, we emailed each public contributor to ask if they had any wellbeing needs we could support to facilitate their involvement. The public contributors had a named contact from the public involvement team, to whom they could contact with any involvement issues.
Public contributors were reimbursed for every CRIISP activity, except where involvement on a voluntary basis was requested by the public contributor. National Institute for Health and Care Research UK guidance informed the CRIISP pay scale .
Can you give more examples of how you worked with them?
Over a 3-year period, public contributors met at least quarterly with researchers in their research topic area, via the online platform MS Teams®. There were additional activities outside of the meetings to support the researchers’ work.
Within the network of public contributors, ten people took on an additional role to co-chair the meetings associated with their research topic (two people for each of the five topics). A few weeks prior to each research meeting, a shorter meeting took place where the researchers, co-chairs and representatives from the PI work package planned the upcoming main meeting. This ensured the agenda and time allotted were appropriate for the desired outcomes and was an opportunity to review any pre-meeting activity and content to ensure it was easily understood by the public contributors. MS Teams® was an effective and secure method of convening online meetings and sharing and collaborating on documents.
Public contributors and researchers were invited to share their PI experience via blogs on the CRIISP website and articles in the newsletters.
What impact did it have?
Public contributors worked together with researchers to decide how to conduct the research, and ensured the research reflected what it was like to live with chronic pain. They acted as critical colleagues, asking questions, sharing in decisions and providing constructive feedback to the researchers. They provided feedback on study design to ensure it would be acceptable to people living with chronic pain, and ensured participant-facing study documentation was communicated in plain language.
Public contributors influenced the direction of research within CRIISP and contributed to dissemination activities.
What would you change if you could do it again?
Earlier training and guidance for researchers, to ensure they understood the role of the CRIISP public contributors and how to work collaboratively with them.
What tips would you give another researcher?
Include public contributor(s) as core member(s) of the project team to ensure PI is actively considered throughout the entire research programme.
Ensure PI is properly budgeted from the outset. Public contributors should be reimbursed for their time and expertise.
Have confidence that meaningful public engagement can be conducted via online platforms but consider at the point of funding application what additional resource maybe required to enable digital access and ongoing support for public contributors.
What challenges did you face and how did you overcome them?
We have outlined the lessons learned in detail in our publication and PI legacy document but will highlight the following challenges here:
- Ensuring diversity in public contributors: we advertised widely and did achieve reasonable diversity to ensure representation from those whom the research would impact.
- Managing expectations of some public contributors could be a challenge. It was important to set out terms of involvement from the start.
- Not all public contributors had sufficient digital literacy to fully participate. Researchers from the PI work-package were able to spend time with those who needed additional support to help them develop required skills.
- Retention of public contributors over the project timeline was a challenge. Whilst some people left due to life events, we did retain 28 public contributors. This was achieved through offering flexible involvement (for example, pausing involvement for a while if needed) and regular communication (including newsletters) between meetings.
This work was supported by a joint and equal investment from UKRI [grant number MR/W004151/1] and the charity Arthritis UK [grant number 22891] through the Advanced Pain Discovery Platform (APDP) initiative. For UKRI, the initiative is led by the Medical Research Council (MRC), with support from the Biotechnology and Biological Sciences Research Council (BBSRC) and the Economic and Social Research Council (ESRC).