Or: when tree-hugging peace monkeys go bad
I’m a peaceable kind of a guy.
No, really. Stop laughing.
Some of my devil’s advocate rants on this blog aside, I like to think of myself – although you may be guffawing in disagreement by now – as usually having the self-control to be a moderate voice in debates. We all get more out of discussions where all participants are given the respect and liberty to air their opinions in full, and expound their views to the very best of their ability.
So why did I get so hot under the collar at a conference last week?
I’ve had the weekend to reflect on my uncharacteristically testy response, and am pleased to report that I can now account for my peevishness.
Simply put: I spent the best part of two days in conversation about ‘the patient’ with the delegates of two separate conferences in two different cities without there being a patient in either room.
Not a patient in the room, that is, apart from every single one of us there, either managing a chronic condition ourselves, or waiting until the meter pings are we are no longer a patient-in-waiting, but a bona fide in-need-of-care-right-now-goddamit patient.
This, to me, seems counter-intuitive.
I don’t want to talk about the patient, I want to talk with patients.
I want the conferences I attend to talk to patients, through patients.
When we talk of ‘the patient’, who do we mean?
- Where do these patients live?
- What languages do they speak?
- What access to health services to they have?
- What are their medical histories?
- Are they part of a peer community, online or otherwise?
- Have they any idea about the sort of support that they may be entitled to receive from national, regional or local bodies?
- What sort of health information and personal records do they have access to?
- What level of health literacy are they in possession of?
- What other factors may be contributing to their exclusion to healthcare?
- Do they have what we may characterize as a traditional or a more progressive relationship with their healthcare professionals?
- What do they think?
- What do they feel?
- What do they want to say?
- Are they supported by family, or carers?
- Are they coping with their conditions on their own?
- Are they coping at all?
Until patients are invited to participate at every healthcare conference in a full capacity, and not simply pushed on stage as a token gesture to deliver a keynote before the ‘real’ business begins, I’m not sure how much further we are going to get.
I declaimed in a rather theatrical manner last week that ‘the patient is your god!’ However, in reality I suspect that the majority of patients do not wish to undergo some sort of apotheosis. Rather, they would like to be afforded their full share of the health conversation: to be recognized as equals and be treated accordingly.
Patients are not case studies. They are healthcare’s centre of gravity. It is time that conference organizers allowed themselves to feel their full influence upon them.
To that end, I’d ask you all to join me in signing the P5 Proclamation, an open petition to all healthcare conference organizers asking them to acknowledge the above, and deport themselves accordingly when planning future events.
Here is the link, and here is first draft of the language in isolation:
We the undersigned respectfully request that healthcare conference organizers adhere to the P5 Proclamation whereby patient, physician, pharma, and payer perspectives are represented equally within programmes, that all participants from all stakeholder groups are remunerated equivalently, that all conflicts of interest are disclosed, and that all honoraria disbursed are made public. Where speakers’ either wish or are required to waive payment, their fees will be contributed to the healthcare charity, organization or concern of their choice.
It is up to you how much further you want to take your commitment in terms of your choosing to skip events that do not adhere to the precepts of the P5 Proclamation either as speakers or attendees, but real in terms what do conferences that do not embrace these principles have left to offer you? Without the balanced stakeholder representation that this proclamation would assure, within our own constituencies we’re doing little more than talking to ourselves.