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The P5 Proclamation: Patient, Physician, Pharma, Payer Perspectives

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.

An important coda: let it be understood that the above is neither referring to any specific conference series or organizer, but rather all the organizers of future professional and healthcare conferences in general. Thanks to @aurorhealthpr and @hgazay for suggesting expanding the original P4 concept.

7 thoughts on “The P5 Proclamation: Patient, Physician, Pharma, Payer Perspectives

  1. HI Andrew,

    Gr8 intiative! I was at one of the conference that raised your colour, so I agree. did sign your petition!. (Maybe, you direct your readers more explicitly to the link than just highlighting the “here” – at least to me it was directly clear.)
    Anyway it is quite a change for certain stakeholders to be meeting actual “patients”. And it will set some dispute, like “Hum, we as medical professionals, we have things to discuss that patients do not understand? Why bother them”.. (Think about it twice: do I mean what you think I meant? ;-)) May be look at the example re. telecardiology: http://bit.ly/6vKzNv But it need to be tried!
    So anyone second the petition re #P5 ! I did!
    Cheers
    Rob

  2. Andrew,

    I’m not 100% certain I agree with every detail of the bullet points on that doc, but I signed.

    My quick thoughts –

    * patient, physician, pharma, and payer perspectives are represented as equally as possible within conference programmes
    ==This depends a lot on the conference’s audience. An IT conference is different from a pharma marketing conference.

    * participants from all stakeholder groups are remunerated equivalently

    * all conflicts of interest are disclosed

    * all honoraria disbursed are made public

    * where speakers either wish or are required to waive payment, their fees will be contributed to a healthcare charity, organization or concern of their choice, and all such donations made known
    ===I’m concerned that this would mandate a certain level of conference budget, which could be a problem.

    As an underlying principle I assert that health and healthcare are public issues with impact on all citizens, not merely a market to be harvested by any means available. I seek policies that will drive improvements in health and healthcare, more than I seek “BS preventers.”🙂

    • Hi Dave.

      Thanks for your thoughtful comments, both of which I think add value and move the proposition forward.

      What I didn’t point out in the original post is that the P5 Proclamation is in open draft, and that suggestions for revised language are welcome from all signatories.

      Please feel free to make the edits.

  3. Hi Andrew,

    While I agree that there should be patients who are currently undergoing treatment present at conferences dealing with health issues, I consider myself a patient too. All the rights I seek for others stem from my position that one day I may require similar help. I don’t buy that I am not a patient unless I am afflicted with a disease. I’m glad I am healthy, but sooner or later my age will ultimately get the best of me. Besides, even healthy people are patients who go in for check-ups with their doctors.

    So, I think that as people, healthy and unhealthy alike, we all want respect and the best care available. From that stand point, if we invite as many interested parties as possible, we’ll be on the right track.

    • Hi Carmen

      Lovely to see you here, thanks so much for your comment.

      As you mention, and as I gesture to in the post above, we are all either bona fide patients in the here-and-now or patients-in-waiting. That’s why we take such a keen interest🙂

  4. Hi Carmen,

    I don’t know you so I have no opinion at all about your thought processes.🙂 In my experience you’re much better than the norm, because there’s ABUNDANT evidence that the healthcare system is utterly failing to be patient-centered, and something must change.

    As just one example, a few years ago a patient managed to convince my hospital that to a family, the ICU looked more like a fortress than a warm place to heal together. The hospital spent a year redesigning. Then, wisely, before building they showed the design to the families, who said “No, you completely missed the point.” They had to start over from scratch.

    And they did, with a phenomenal jump in satisfaction ratings by families.

    You may well have been able to do it right the first time. Congratulations! But that’s not how it generally goes. And to fix that we might try to do a total head transplant (years of training) on staff, but it’s a lot more of a straight line if you just involve patients from the beginning. Not complicated!

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