who speaks for patients, anyhow?

Who speaks for patients?  Patients do.

I’m happy to see the surge of patient experience and patient centred care themed conferences around Canada.  This is a good start.

But theming a conference as patient centred is not enough.  This is only the first step in the evolution of inviting the patient voice to share experiences and provide feedback to health professionals.

Many of these conferences have health professionals, researchers or administrators speaking about patient centred care. Or they don their but everybody is a patient hat and talk on behalf of patients.

There is sad irony about having professionals speak on behalf of patients at a patient centred care conference. Patient centred care is about doing things with us, not to us or for us.

I understand why conference organizers bring in health professionals who have had experience as a patient to speak. These speakers are colleagues of the audience members, and are likely seen as less threatening than a layperson patient speaker.  But I think the idea of using a patient speaker who is not a health professional is a bold one.

If we move along the evolution, a layperson patient speaker is asked to present.  Finally we are starting to model patient centred care.  (Even better?  At Canadian conferences, patient speakers have local Canadian context).

The different kinds of speaking spots offer varying levels of involvement, too:  from speaking as a panel member, to a break-out session, to opening or closing a conference.

Normally, an opening plenary session is the most prestigious of all speaking spots.  But I think if you are truly going to model patient centred care, this spot is not occupied by a lone patient speaker.  Instead, the patient speaker co-presents with a health professional. They don’t present two separate presentations; they spend time preparing a collaborative presentation. They truly share the podium.

And if you add a patient representative on your conference organizing committee?   Voila: you have full-blown patient collaboration.  And then you are walking the walk, folks.

I have created this handy The Ten Levels of Health Conference Evolution table that health conference organizers can use as reference:

Slide1

 

3 thoughts on “who speaks for patients, anyhow?

  1. INFO ACCESS says:

    Important addition : compensate patient presenters for expenses and time:
    “One of the final questions that the audience asked us was what ideas we have for getting more people like us involved at every level, and I countered with a question. I asked this audience, made up of doctors and other clinicians, pharmacists, admirals and even representatives from the Surgeon Generals office, how many of them had to use vacation time to attend the meeting today. No one raised their hand. Patients and caregivers are asked to give up time in their already full and complicated schedules to help out these healthcare professionals. Meaningful engagement would be asking patients to be a part of the team, recognizing the value that they bring to the table, and showing them that you appreciate them through respect and compensation.”
    http://e-patients.net/archives/2014/03/erin-moore-your-message-did-not-fall-on-deaf-ears.html

  2. sue robins says:

    Thank you for your important comment. I very much agree – three years ago, I sat on a panel with other ‘professionals’ – I knew they had all been compensated with an honorarium for sitting on the panel, and I was offered only to have my expenses covered. I thought – never again am I going to allow this to happen – and I have to use my voice to speak up about this too. Patient speakers should ask – what is your budget, and say, here is my fee. There are so many factors in ensuring that patient involvement is meaningful and not tokenistic, and compensation for speakers is a crucial one.

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