It’s Melbourne Cup Day today and I’m bound for Brisbane for the HIMSS Asia Pacific conference. I’m speaking in the consumer partnership track, which allows me to get on one of my high horses (Cup reference #1) to speak about the importance of including health ‘consumers’ in…well, in everything.

Right out of the gates (Cup reference #2) I will be speaking about how a health conference that doesn’t allow for people living with that health condition to attend is already not partnering properly.

I want to look at the word ‘partnership’, which I actually think is a bit of a misnomer most of the time in healthcare. There remains such an imbalance of power and representation in most cases of the development and delivery of services, activities and resources, yet partnership suggests that everyone is equal. I can’t count the number of times I have been ‘the’ consumer representative in a roomful of healthcare professionals, researchers, administrators, industry reps and policy makers. They will all be there in droves, and there I am a lone voice.

If I’m being honest, I think that the idea of partnership needs to be questioned, because that suggests that everyone’s voice should be equal. Perhaps it’s a little radical to think this way, but quite frankly, I don’t think everyone’s voice should be equal. I think the most amplified voices – yes voices – should be those of the end user – the consumer.

My talk is also going to highlight tokenism in consumer partnerships and engagement. The idea that ‘any consumer will do’ is rife. How do I know that?

Well, I get contacted every week asking me to be a consumer rep on something or other. Most times I say no and recommend someone better suited. Such as the time (just a few weeks ago) I was invited to sit on a committee looking at programs to support men with type 2 diabetes diagnosed in their 50s, living with erectile dysfunction? When I pointed out that finding a few men with type 2 diabetes diagnosed in their 50s would actually make sense, I was told that I would do a fine job representing them. Yeah – no I wouldn’t. Because I know nothing about being a man, being in my 50s, having type 2 diabetes, or erectile dysfunction. How’s that for a quadrella? (Cup reference #3)

But the one issue I want to focus on – because I think it actually is a super easy concept to grasp – is the issue of influence, or rather the consumer’s ‘power to influence’. This is a biggie because for me, it is the cornerstone of engagement, and it is actually quite easy to measure. We can have whatever framework in place – the policies, the procedures, the advisory boards and the teams dedicated to putting the consumer first – but if those consumers do not have the power to influence what is going on, they are being excluded from having any real power and we then we need to question if there is true partnership.

I keep coming back to this – I spoke about it at the co-design session at the Australasian Diabetes Congress this year. I have also written about it a lot here. And I talk about it a lot when I am speaking with organisations and industry about whether their so called engagement program is truly going to matter.

I’m not trying to oversimplify this – I understand there are a lot of factors to consider, and sometimes there is legislation and governance to work through. But governance can be restructured. As can legislation.

But maybe I am. Maybe I am trying to make it easy because too often there is fear and uncertainty about how to engage, and this leads to either things being done poorly. Or not at all. And to be honest, I’m not sure which one is worse.