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The Musculoskeletal Patient Involvement Group (PIG), established in 2017 in partnership with Liverpool Health Partners, aims to bridge the gap between researchers and those affected by musculoskeletal diseases.
This successful collaboration has thrived on the premise that patients bring a unique, lived experience to the table that can provide critical insights to researchers. Dr Helen Wright took over the group in 2018 and has led it ever since, ensuring patient voices are not only heard but play a key role in shaping research. As Helen puts it, "As a researcher, we may think we know what it is like to live with a particular disease, but often we make assumptions which are incorrect. The patient group are really good at asking questions which make our researchers think outside the box."
Why was the PIG created?
The idea for PIG came from a recognition that patients should be involved in the research process, not just as subjects but as contributors. Helen’s early experiences working closely with arthritis patients during her PhD showed her the value of their insights. "During the first week of my PhD, my clinical supervisor allowed me to sit in his clinic and meet patients. I have always understood the benefit of researchers spending time talking to people with the conditions we are working to try and cure," she says.
Helen’s aim in leading the PIG is simple: to better understand the research priorities of people with musculoskeletal diseases and to provide a space where patients feel comfortable discussing the biology of their conditions. Through regular meetings, members of the group can contribute to shaping the direction of research, while gaining valuable insight into their conditions; something many participants have said provides them with a more optimistic view of their condition.
The value of PIG to its members
Len, a long-standing member of the group, joined with limited knowledge about arthritis, saying: “Before joining the PIG, I had always believed that osteoarthritis was due to accumulated wear and tear, and that all that could be offered medically were painkillers or joint replacements down the line. I now understand that the situation is much more nuanced, and that research is showing many biological mechanisms are involved and there may be a wider range of therapeutic options in the longer term.”
Irene, another member of the group, believes there is a mutual benefit for patients and researchers. "At the start, I was unsure quite what this venture involved but quickly realised that there is so much important research that goes on in the background without us knowing." Over time, Irene found that the group allowed her and her husband, Mike, to give something back to the scientific community, working on projects like developing a new leaflet on rheumatoid arthritis. "As a lay person I have been treated with respect, and my opinion has been welcomed whenever I have contributed to the discussion. Helen’s management skills are exemplary and inclusive. However little or much we can contribute; our opinions are valued,” she says.
Francine, who joined the PPI group shortly after the pandemic, echoes the feeling of empowerment in being part of the community. Her osteoarthritis is still in its early stages, and being involved in the group has helped her dispel common myths. “I now feel empowered to reject simplistic statements like ‘It’s wear and tear; it’s only to be expected as you get older,’” she says. “I like the idea that maybe I am making myself useful,” she adds.
Looking forward: The continuing mission of the PIG
Since its formation, the PIG has evolved into a vibrant and collaborative community, with a mission to improve musculoskeletal disease research. As Len points out, the group promotes public understanding of arthritis and empowers patients to take an active role in managing their conditions. "Medicine works best when there is a true partnership between the patient and practitioners," he says. “It’s this partnership that the PIG fosters, not just between patients and healthcare providers, but between patients and the scientific community.”
In a world where medical research can often feel distant and detached, the PIG stands as a model of how collaboration between researchers and patients can lead to better science—and better care. As the group continues to collaborate, it will play an essential role in shaping the future of musculoskeletal disease research, both within our Institute and beyond.