Road to Collaboration 1 – Engaging PwP in research

I am grateful to Ben Stecher for publishing the  first edition of this article and  introducing me to PRAG. 

Let’s start with a simple generic question. Will the life science researcher engage with the layman? 

  1. Obviously yes if the layman is, or possesses, something the researcher needs.
  2. Most likely not if the researcher believes the layman cannot help
  3. Maybe anyway yes if the researcher thinks it would be a “wise move”
  4. 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 research engagement. In the real world it’s not. Engagement comes too late in the research process or “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 let’s shift the generic question into the PwP world. PD research today is an amazing combination of science and technology, but also a maze. 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 four answers to the generic question.

  1. The PwP is, or possesses, something PD research needs.

Because research triggers the process the PwP becomes an object of investigation. This automatically skews ownership of the relationship. The PwP’s brain contains information, dead or alive.  At one end of this spectrum is the PwP brain post mortem. At the other end is the PwP’s possession of knowledge embodied in answers to a questionnaire. A clinical trial will sit somewhere on this spectrum. The terms and and conditions of engagement between researcher nd PwP vary greatly along this spectrum.

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 their knowledge at no charge.

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 participation campaign 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, in which case answer 4 applies. 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 issue of how to engage with PwPs undoubtedly resonates within the research community. The answer, I suggest, is bit by bit. Pull the potential research engagement proposition apart, look for Cause – Consequence and measure it.auses of PD are manifestly complex. Causes have consequences, and consequences inform causes. In this way the knowledge sets of the researcher and the PwP be expanded so that they intersect.

For example, the integration of PwP input at the formative stages of a drug trial protocol would make a significant difference. If you require 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? This requires acceptance that the trial content and process cannot be defined solely in the interests of, for example, jumping Pharma’s trial approval fences.

At the other end of the research spectrum we see lots of questionnaires, both within a research or clinical 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.

Beyond the collection of opinions or questions of self-knowledge, the engagement of PwPs has to be on the basis of knowledge. Having Parkinson’s disease 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 a questionnaire of 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.

We need to find better ways of expressing the efficacy of PwP participation so that the value is clear to those not yet on board.  Generic involvement campaigns can serve only to pull people in – they do not deal with the complexity of the PD situation. 

Second Edition

Copyright © Christopher Maycock 2018-2019

Chris Maycock’s career was in IT, principally marketing and project management.  He has given public service as a Parish Council Chairman and now as Treasurer to a Branch of Parkinson’s UK. Married 45+ years to the same person and a PwP since 2011, Chris is motivated by learning, rational explanation and clear expression.

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