We are really pleased to have a guest blog from one of the members of Patients Active in Research (PAIR). Fraser Old tells his patient and public involvement (PPI) story below.
Despite a life-long leisure interest in sailing, it took my wife’s arthritis to bring about an acquaintance with the 18th century naval surgeon, James Lind. The connection began after she had a major spinal operation and I saw a notice for an evening lecture at the Nuffield Orthopaedic Centre (widely known as “the NOC”) during one of her follow-up visits. Being a retired researcher (albeit in physical sciences and not medicine) I persuaded her to come along to hear Jeremy Fairbank and Jill Urban talk about their work on the origins of lower back-pain.
Over the next few months, by one of those combinations of coincidence and chance, I was invited to join the NOC PPI Network. Through that, I became more involved in orthopaedics and, in parallel, issues of declining memory – the latter leading to membership of another patient/carer group, DeNDRoN (the Dementia and Neurological Diseases Research Network, subsequently rebranded as Join Dementia Research.
A couple of years later, I was nominated as a carer representative for a Priority-Setting Partnership run by the James Lind Alliance, which was my introduction to the collaborative research projects run in the spirit of the eponymous surgeon. This project brought together patients, carers and clinicians from all branches and disciplines to identify the most important research needs for hip and knee replacements. For someone with no medical background whatsoever, it was an enlightening experience to join the health professionals in defining the needs for operations which are becoming ever more common amongst our ageing population. And in the course of the project, my grumbling hip deteriorated to the point where I myself had a replacement, although this level of personal commitment is not normally required of participants.
The project itself with its broad scope and painstaking refinement of literally hundreds of questions was an insight into the complexities and uncertainties of modern health care. One of the findings of the initial project on joint replacement was the need for clarity on some key issues in the preliminary stages of the disease and so this led naturally to a second project on how best to manage early-stage arthritis. That project is now complete, and I was also invited to participate in another project on scoliosis.
Throughout these discussions, I have found that my research background and our personal family history have been valuable platforms to contribute to the topics. It has also been eye-opening to see the range of projects open to public consultation and contribution, although I personally have tried to stay within my own experience. While there are many other subjects to be studied, personal experience seems to me to be one of the more valuable qualifications.