Some alternative ways to get PD research done: Part 1. PwP as researchers

This is a guest blog by John Turner, who runs the site Parkinson’s measurement. This article is the first in a series of seven linked essays. In it, we describe some alternative ways to do PD research; ways that might quickly improve the quality of life (QOL) of people with Parkinson’s (PwP). Here, we are only concerned with research into “safe” therapies: think vitamin C, not DBS. We seek to carry out clinical trials led by PwP, in a way in which the results can be fed directly into clinical use. The seven proposals can be adopted individually or altogether.

Chris Maycock’s recent post on this site: “Engaging PwP in research – the road to collaboration” sparked the idea to this post. Our approaches are very different.

All PwP help Parkinson’s research in one way or another: we join clinical trials, we help to prioritise objectives, we advise on the PwP friendliness of the way the trial is carried out, we fund raise, and we pay premium prices for our drugs on the understanding that much of the excess goes into researching and developing the next generation of drugs. These roles (with the exception of the size of the premium, perhaps) are necessary. They need to continue. I see what is proposed here as additional to current research, and not replacing it.

But, there is one area of involvement where PwP play almost no part, and that is in actually doing formal research. (By “formal research” I mean research that is widely communicated and peer reviewed. You only need to read the Parkinson’s Disease, PD, forums to see that many PwP do “informal” research into their own condition, but without the intention of publishing the results beyond the forum.) We argue here that not involving PwP in formal research is wasting a huge potential resource.

Many PwP have or have had careers as doctors, chemists, physicists, engineers, mathematicians, computer scientists, managers and many other jobs that are relevant to researching into PD. We do not lose the skills we have gained during decades of work the moment at which we are diagnosed with PD. Moreover, the slowly progressive nature of the disease (although, unfortunately, not slow enough) gives many more PwP the time needed to get up to speed. Added to PwP themselves is the wider community of people affected by Parkinson’s: the wives and the husbands, the sons and the daughters, etc., of PwP.

In 2018 there’s about 145,000 people in the UK (population of 66 million) with Parkinson’s [1]. Let’s make a very rough estimate of the total worldwide number of PwP. We assume that prevalence levels in the UK give a good estimate of the worldwide average figure. The world population in 2018 is 7.6 billion people. That gives a worldwide total of 16 million PwP. Taking into account friends and families gives a total of, say, 50 million affected by Parkinson’s. Not all of these people will be able or willing to do research; for many just surviving the day is effort enough. But, I’m confident that we can get at least 1,000 people actively researching PD.

We are fortunate to live in a time where many of the tools needed to do research are to be found in the homes of PwP: lap tops have the computing power to analyse data, smart phones have sensors to measure movements, both allow you to be up-to-date with the literature and to collaborate with others from all around the world. And, where the equipment is not already available, it can be built cheaply using easily sourced electronic components.

By keeping our work, designs, protocols, data, analyses, reports “open” we can reuse knowledge and so be more productive.

PwP researching. Fanciful? Possibly. But, such large computer systems as the GNU/Linux operating system, Open Office and the statistical programming language r have been built by groups of volunteers using and building open technology.

We should try. We have nothing to lose.

[1] “The Incidence and Prevalence of Parkinson’s in the UK”
C. Doyle, Parkinson’s UK, 2018.

Team P.R.A.G.

We are an international group of 8 people, connected by Parkinson’s Disease, aiming to influence the Parkinson’s Disease research agenda through research advocacy. We have been working together as a team for nearly a year. Each of us brings significant experience, activism and stamina to the advocacy table. Our group, as well as our readers on social media, is bound together by the urgent need of over 6 million people of a future without the ever increasing burden of Parkinson’s Disease.

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