The challenge of authenticity

Image: https://deltahub.io/en-uk/blogs/news/cant-open-hand-all-the-way-find-out-what-could-be-wrong

The name of this blog and the purpose of my research is to find an authentic way to carry out public involvement in research. It sounds like a lofty ideal – and it is, but none the less I have set my course to try and find the best ways to enable patients and the public to engage with healthcare research.

You might notice I wrote ways in the previous paragraph; that wasn’t an error. I don’t believe there is just one way, one approach, one methodology which all PPI practitioners should use when engaging or involving the public.

Why?

The answer is simple – because every person, every context, every experience is subtly different and a one-size-fits-all approach is never going to work. Yes, there will be commonalities which all heart disease patients might experience for example, or there might be similar traits you find in coastal communities, but each combination of those subtly different things needs to be considered and taken into account when you’re working with people. We might joke about it and quote from Monty Python’s Life of Brian saying: “We’re all Individuals!” but of course, that’s the point. No-one else has quite the same combination of hair & eye colour, plus birth place, plus name, plus childhood experience, plus…plus…plus…. All these different variations on a theme are what contribute to our individuality and uniqueness. So, any work we do around engaging with and involving people in research should hold that information front and centre.

This is what an authentic approach to PPIE seeks to enable – at least that’s what my thinking is so far! Authentic PPIE should allow for all the individual needs, experiences and contributions of the people in the room (members of the public and staff) to be recognised and validated, so that everyone can make a meaningful contribution to the design and delivery of research.

“Everyone?” you say. “You can’t mean ‘everyone’. How on earth could you possibly do that, to that degree or level of depth? That’s impossible.”

And you’d be right. It is impossible in one meeting. It would be an impossible feat to be able to understand, cater for and acknowledge the needs of every single person in a room…but I’m not suggesting we try and achieve that in one meeting. I’m suggesting we work towards that goal, and hold it in mind, over a period of time.

I’m suggesting that we do this work relationally.

You see, the thing about getting to know people, understanding who they are and what they need takes time…a lot of time. Building relationships is about investing time and understanding with people so that they can, after a while, be in a room with other people talking about research and their lived experience and feel like they are seen and understood. That’s not a speedy process and it involves building trust and setting clear boundaries from the beginning.

This relational approach to public involvement is a far cry from an experience I had not long ago, when I was in a study development meeting and the Project Lead said (quite rightly) “We won’t have time to do any proper PPI before the deadline so we’ll have to talk about what we intend to do.”* To my deep annoyance, another senior researcher in the meeting said “Well we’ve got three days – can’t we just email some of our volunteers and ask them for something?”

*Obviously it would have been better to have known about the study sooner so that we might have been able to include a meaningful PPI conversation prior to submission, but honesty in an application goes a long way.

I was so cross! This is a classic example of extractive PPIE – quite literally when you extract information, like taking a splinter out of your finger – it’s a one-way process. There’s no dialogue, no mutual benefit, it’s just: “I need this from you now, because it’s convenient to me, and when I’ve got what I want, I don’t need you anymore.” This is when PPIE is treated as a resource, as a means to an end. It is not authentic to anyone involved. After all, if we lean on the splinter analogy again, it’s not like anyone wants the splinter put back?! That’s painful and damaging and just reminds people of the discomfort they were in.

To challenge this mindset means drawing attention to the fact that the senior researcher was not in fact being respectful or authentic in their beliefs or behaviour to the public contributors.

And yet they may not think they’d done anything wrong?

That senior researcher might have thought that something was better than nothing and that having some input from public contributors, even minimally, showed good faith and the intention to follow-up on this initial request?

The trouble is that if you act that way often enough then a one-off event becomes a habit and a habit becomes a mindset or a belief and then it’s just ‘business as usual’. There no need for PPIE to be mutually beneficial or relational because you only ask for what you get and you always get what you ask for.

The title of this piece is ‘the challenge of authenticity’, and I probably should have rephrased that as the cost of authenticity. The desire to be and act in a way which is relational and respectful is a values based approach not a systems based approach. The systems based approach is one where we have a mechanism set up to request and receive PPIE input from public contributors – and we do just that. A values based approach sets the terms and considerations for how that should be done and why it should be done in that way. It is inherantly relational in nature because it takes into account the needs of the individuals involved (researchers and public contributors). A systems based approach doesn’t need to because it views the people as components within the system and not requiring any greater care or attention than any of the other constituent parts.

The trouble with values is that they’re personal. They belong to me and they reflect how I feel about you. So if I share my desire and intent to work in an authentic, relational way within the system or with you, there is a chance that my values (and by extension myself) will be rejected, either by the system and how it functions, or by you as an individual and your beliefs. Now I don’t want to impose my personal beliefs on another individual, that’s not what I’m talking about here. But if I observe that the system and how it functions is devaluing other people, that clashes with my desire for authenticity. If I challenge that system and I’m told ‘no’ then there’s a cost to me individually, a bit like moral injury when I’m asked to act or work in a way which clashes with my personal beliefs or values.

There’s more to unpack on this, but I’ll leave you with a couple of examples:

Consider someone with complex health needs. Those needs impact one another and can create symptoms which other people find challenging or uncomfortable. We talk about ‘safe spaces’ but how safe does it feel to that individual if they’re told that their symptoms (which they have no control over) make others feel uncomfortable and could they just stop doing that please?

Or what about the person who’s been wrestling with a particular decision for a long time? Maybe it’s about deciding to step down from their role or go part-time. They know it’s the right decision to make for themselves – an authentic choice – and that there are personal costs and consequences to not making that decision. But when they do finally take the step of actionning that choice, it’s pointed out to them about the impact on the team and could they not have thought of an alternative option – even though they had been encouraged to ‘be authentic’…