Posted in Patient Advocacy

Patients As Partners or Patients As Tokens?

It has been fascinating to watch a discussion take place on social media centering on the pertinent issue of whether patient engagement is a concept which is truly being embraced or is mere tokenism.

The debate started with the announcement of a Canadian Patient Experience Summit:

Connect with other healthcare leaders at the NATIONAL FORUM ON PATIENT EXPERIENCE and help shape the future of patient centred care in Canada.

This unprecedented event provides the perfect platform for exchanging ideas and sharing solutions. The conference is dedicated to addressing the central issues and successful strategies for implementing patient centred care.

However, one vital ingredient from the conference appears to be missing:

The Patient!

Colleen Young asks the obvious question of the organizers: ” Do you know about the patient motto “nothing for us without us”. More and more health conferences (med2.0, medX, Doctors2.0) are including patients by setting up special funds to allow them to participate. How can one develop, and indeed implement, truly patient-focused initiatives without patients?”

Other commentators quickly added their voices to the discussion and while the patient advocate in me nodded in agreement,  the PR professional in me started to see a PR disaster unfold in real-time online.

You’re probably familiar with the work of Lucien Engelen, who recently declared he would boycott any healthcare conference that didn’t include patients, and who asked other healthcare leaders to join him. I think this is a fantastic opportunity for your organization to show real leadership. While the backlash against conferences that exclude patients has been fierce, the reverse is also true … conferences that embrace patient involvement enjoy great support from a very passionate, vocal and big community!

So a potential PR disaster could still be turned around!


Carolyn Thomas expressed her concern that doing so at this stage will just reinforce the tokenism aspect of including patients

Call me cynical, but in fact I now wonder if our little tempest in a teapot here is going to attract the attention of some PR types at SI who will, as so often happens in industry, decide to co-opt patient engagement by deliberating getting onboard the bandwagon in order to earn the “Patients Included” badge (which until now they’ve never even heard of!) since we have kindly brought it to their attention.

I am really interested to see how this will be addressed by the conference organizers. It demonstrates once more the rise of the patient voice – a voice that will not tolerate tokenism – and serves as a warning to all those who jump on the patient engagement bandwagon without a true commitment to its principles.