It is an article of faith in science that discoveries build upon previous knowledge. Sir Isaac Newton, discoverer of gravity inter alia, expressed this better than most when he said “if I have seen further it is only by standing on the shoulders of giants”. In essence, whilst downplaying his own contribution, he acknowledged the nature of scientific research, discovery building upon discovery.

This is an important concept and equally valid today. Science does not reach conclusions without building upon solid foundations. Often those foundations are bound together by knowledge from different branches of learning. In some ways even that diversity may contribute to the strength.

In recent years, we have seen a substantial conceptual shift in the role of patients in medical research and discovery. Patients are evolving away from their traditional role as the guinea pigs of the scientists. Increasingly patients are involved in reviewing scientific applications, contributing to the process itself as often as not. There are even whisperings of patient driven and patient initiated research in the near future.

In many respects, these role shifts are the result of many years of patient campaigning and advocacy. We, as patients, take it as our right to be involved at the very core of the research endeavour. In essence we adopt the age-old motto “no decisions about us without us”. Like a country’s constitution, we hold it as quintessential that we have the right to represent ourselves, that nobody should speak on our behalf. To all intents and purposes, we demand parity with our scientific colleagues.

And herein lies the problem. We are not scientists. We are in essence asking for roles and responsibilities that in many cases we are not ready to implement. Put bluntly, we are often out of our depth.

Don’t get me wrong – I believe entirely in the principle of patient involvement. It’s not that it is the best way forward so much as the only way forward. Research about patients without patients is an absurdity. Of course patients have to be involved. We just need to find out how.

Let’s return to Newton for a moment, his apples and his giants. Or more accurately, their modern counterparts in their laboratories around the world. When writing grant applications or research publications, it is taken as read that the modern research scientist is absolutely up-to-date on the latest research elsewhere, that they can recall their findings and place their own work in its appropriate context. In essence, they know the exact identity and detail of the giants upon whose shoulders they are standing. Research is iterative. It has to be. It builds on previous discovery and projects forward by inspired intuition and happy informed guesswork. Knowledge and understanding of “the literature” is imperative.

Theories created in isolation rarely find favour. Not because they are necessarily inherently flawed but because they fail to acknowledge the importance of previous discovery.

At worst, this amounts to rediscovering the wheel. Not surprisingly, grant awarding authorities take very little interest in work that shows such poor scholarship. Publishers likewise spurn manuscripts that fail to acknowledge the primacy of others’ work.

But what, I hear you ask, does this have to do with patients and patient involvement in research? We’re not scientists, you say. Certainly, but we aspire to equality in respect and understanding. And although we have those aspirations and seek those roles we are not, as I stated earlier, universally equipped to do so. And I believe the reasons for this are simple. We, as patients and advocates, stand at ground level. We do not stand on the shoulders of giants.

Parkinson’s is a cruel mistress. As the years go by post diagnosis, we shift from timid ignorance to vocal experience before gradually disappearing again, raging against the dying of the light. It is one of the most brutal ironies that one reaches the greatest understanding of the condition only as one’s ability to communicate that knowledge dwindles to the sound of silence.

This is the problem. These are our giants if we only but recognised them. And, if you will excuse the following excruciating mixing of metaphors, we rediscover the wheel because we do not stand on the shoulders of giants.

Let me personalise this. I have had Parkinson’s for around 13 years. During that time I have witnessed – even been part of – many initiatives aimed at improving quality of life, better understanding the condition and even hastening a cure. Often these initiatives were led by advocates now gone. And as they faded away, so did their ideas.

And every few years, a new generation would appear, full of energy and inspiration, brimming over with “I’m different, I’m going to beat this thing”. And as the new generation of leaders emerged, so did their followers. Chat rooms and discussion groups would emerge, with different names but strangely familiar content. Old issues have been recapitulated.

But the one thing signally absent in this process is communication between those dynamic young firebrands and the flickering embers of the old guard. The young were too busy to listen to the old and the old too self absorbed with simply surviving for there to be meaningful exchange between the two.

This is a terrible state of affairs. The older, or perhaps I should simply say more experienced, patients have walked the same roads that the youngsters now tread. If the youngsters looked hard enough, they would see their footprints. They would see where discoveries had been made or ideas refuted.

But this isn’t about the inability of the newer generation to listen to their forebears. It is as much an admonishment of the older generation for failing to pass their ideas on to those best equipped to implement them.

This is where we differ substantially from scientists. Whereas their very success depends on their knowledge of what has been done previously in their fields, this is not the case in patient advocacy. The younger generation are not absorbing or even aware of the treasure chest of knowledge to be tapped by conversation with the previous Parkinson’s advocacy generation so to speak. And the older generation are failing to show the youngsters where the treasure chests are. This I sincerely believe is essential if we are ever to claim our rightful positions at the tables of research charities, policymakers and discoverers. We have to find ways to build on the experience of previous generations. Only then will we truly be standing on the shoulders of giants.

Further recommended reading: Jean Burns, “On the shoulders of giants”. https://pdblogger.com/2019/08/22/on-the-shoulders-of-giants/

Better patient advocacy. 1: Standing on the shoulders of giants