Engaging PwP in research – the road to collaboration

Written by Chris Maycock. Chris retired from a career in IT, principally in marketing and project management. Public service as a Parish Council Chairman. Now living the dream in Cornwall, the UK’s southernmost holiday destination. Married 45+ years to the same person, PwP since 2011. Interested in learning, rational explanation and anything else that prolongs useful life.


Let’s start with a simple generic question. Would the life science researcher engage with the layman? Obviously yes if the layman is, or possesses, something the researcher needs. Most likely not if the researcher believes the layman cannot help; but maybe anyway if the researcher thinks it would be a wise move. Probably yes if the researcher believes the layman can help even if the “how” is not clear.

In this simple world the balance is tilted well towards engagement. In the real world it’s not. Engagement comes too late in the process; the “wise move” is prompted by political correctness rather than intellectual curiosity. The parties to the engagement are separate; they can’t dance because they don’t know the moves.

Now shift the generic question into our world. PD research today is a maze, not to say an amazing combination of science and technology. The variety of conditions that PwPs find themselves in, or others must describe on their behalf, is endless and confusing. In a very complex world “PwP participation” seems attractive as a simple campaigning proposition, a cause célèbre. But it’s a blunt tool. Let’s look at some evidence of that inside the generic answers.

  1. The PwP is, or possesses, something PD research needs. However, because the latter triggers the process the former becomes the subject. This automatically skews ownership and the terms and conditions of engagement.

At one end of this spectrum the PwP is a body on which to perform experiments, aka trials. The PwP’s brain contains information, dead or alive. Alive marks the other end of the spectrum; the PwP’s possession of knowledge embodied in answers to a questionnaire.

The more complex and invasive is the research need, the more the PwP – PD research relationship is governed by formal agreement. That a contract between the parties is required for a drug trial should be obvious. At the other end of the scale, the questionnaire is usually copyrighted, and intellectual property is created from the PwP’s answers. It’s still a contract, even if the PwP has willingly given away the knowledge.

At stake here is the principle of fairness. Are the rights and responsibilities, the risks and rewards, properly balanced between PwP and PD research for the particular circumstances?  This balance may reflect cultural norms but the legal context exerts more pull. For example, a PwP in the USA is markedly disadvantaged compared to a PwP in the UK should harm be caused. That makes a big difference to a campaigning proposition.

  1. The PD researcher believes the PwP cannot help. That view may be entirely justified. “Basic Research” is a familiar term and it is right up there as an example of the confusing use of words. Basic to the researcher means fundamental, meaning complex. Basic to the layman means simple.

Put more formally, the relevant knowledge sets of the two parties will not usually intersect. There may be PwPs with the relevant knowledge, but they have to be found and their Inclusion has to be feasible. In either case we should be questioning whether the benefit to be gained from making the knowledge sets intersect is commensurate with the cost in time and money.

  1. The PD researcher believes interaction to be a wise move. All well and good if motivated by intellectual curiosity. Not good if driven by political correctness; the malign consequence of a pressure group’s activities or the unintended consequence of an inappropriate research grant application pro-forma.

We should be careful not to bounce people into inappropriate engagement. It will hinder if not also distort the research process.

  1. The PD researcher believes the PwP may be able to help – but how? The causes of PD are manifestly complex. The PD research world is increasingly alive to the complexity of the PwP condition – the consequences. Causes have consequences, and consequences inform causes. The imperative is that the two knowledge sets be made to intersect.

The issue of how to engage with PwPs undoubtedly resonates within the research community. The answer, I suggest, is bit by bit. Pull every piece of the process apart and look for Cause – Consequence. Then measure it.

For example, the integration of PwP input at the formative stages of a drug trial protocol would make a significant difference. If you cause me to travel to an appointment 50 miles away at the crack of dawn it will have consequences for sometime afterwards. Do those consequences distort the outcome? And so on. This requires acceptance that the protocol cannot be defined solely in the interests of jumping Pharma’s trial approval fences.

At the other end of the research spectrum we see lots of questionnaires, both within a research process and from organisations such as Parkinson’s UK seeking to push the research community towards inclusion and pull PwPs in to engage with research . The engagement of PwPs in questionnaires has to be on the basis of knowledge. Having PD does not of itself create knowledge. Indeed the extent of PwPs’ ignorance about their condition is of concern, a whole other topic. The central point here is that PwPs have to have some understanding of their condition to be able to give reliable information. One structural reason for this is the predominance of older people in the PwP population and the increasing incidence of multiple conditions with ageing.

Once again turning the coin, the questions themselves beg questions. Do the tick box options in themselves skew the outcome? Do the questions even make sense? My favourite of the genre is “Rate how you feel today on a scale of 1 to 100”. It underlines the importance of the efforts being put into the instrumentation of the PwP’s body, and into biomarkers, so that a matter of opinion in a questionnaire becomes instead a matter of fact for a dataset. This is a good illustration of engagement at the micro level because it is so heavily dependent on PD research and PwP co-operation.

Presented here is a more clinical (sic) way of thinking about the situations in which PwP Participation should take place, the extent of the engagement, and pre-conditions to make the engagement effective. “Cause – Consequence” is a jolt to remind us that we are integrating two entirely different knowledge sets. This is the real challenge for PwP Participation and this is where the maximum value for both parties will be found.

We need to find ways of expressing the efficacy of PwP participation so that the value is clear to those not yet on board. What we do not need is a campaign drum to bang loudly in everybody’s ears.  


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