Cochrane is a global independent network of researchers, professionals, and people interested in health, including healthcare consumers. Cochrane's healthcare consumers are made up from a wide range of people, including patients (or people with personal experience of a healthcare condition), health and social care service users, caregivers and family members. Also included are people who represent or are advocates for patients and carers. What unites them all is their search for high quality, unbiased information about health conditions and treatments.
Professor Clive E Adams, Co-cordinating Editor of Cochrane Schizophrenia, shares memories of Tony Joy and his valuable contributions made to Cochrane Reviews as a consumer.
Maybe it was 1993. I am not sure. Iain Chalmers sent along this quizzical, unremittingly dogged, intelligent, kind and fun UK Midlands businessman. He had an interest in schizophrenia and wanted to help. We had recently published a blockbuster review (new vs old drug) and were rather pleased with the product – smug, even. Tony lay/peer reviewed it and went straight to the key outcome – a 20% shift on the foremost scale in schizophrenia. He asked “what does that mean?”, “can you put it into words?”. We did not know or how. Our bubble burst. It was quite some time later, still troubled by our deficiencies, that I was able to meet up with the senior US professor linked to that scale and asked her Tony’s question. She immediately saw his point and was kind enough to define that extent of change as “pissing in the wind”. This was a good lesson for Cochrane Schizophrenia to learn.
But Tony wanted to do a review. I think I remember him saying he had once been a salmon fisherman off Canada. Anyway, Tony believed in fish oils. Gee – there is nothing worse than a lovely, energetic, but honestly, openly, biased lay reviewer! We teamed him up with a medic and an historian of the fishing industry (it could only be Oxford!). This was the early days of Cochrane. Would good methods hold out against a tsunami of Tony’s well-meaning bias? His bright intelligence enjoyed the systematic approach. Tony was self[bias]-aware but trusted the methods and those methods, although certainly tested, proved robust. Again, a good lesson for us to learn. Tony continued to hold out hope that the big randomised trial would come along to prove that fish oil really did cure schizophrenia.
Finally, Tony suggested his daughter as a volunteer. She then became reviewer and finally - now Claire Irving – the Managing Editor of Cochrane Schizophrenia.
Some years ago, on receiving his diagnosis of prostate CA, Tony sought the foremost experts, the best evidence and, where there were gaps in the evidence, the randomised trials to participate in. However, after a sudden deterioration in the last weeks, Tony died peacefully on 30th April 2019. There are few folk I have known so little, but owe so much to. So, so many with schizophrenia across the earth have their care nearer that suggested by the best evidence because of the kind, pragmatic, real-world input of Tony Joy.
Clive E Adams
Co-Co-cordinating Editor, Cochrane Schizophrenia
- Read 'The Statement of Principles for Consumer Involvement in Cochrane'
- Visit the Cochrane Consumers Network website