Patients Included

​In the past several weeks I have sat on two health care panels at multi-disciplinary conferences.  The dialogue has been interesting, informative and occasionally challenging and disruptive. But on both panels, and in both conferences I was struck by the absence of an important voice, that of the patient.  In healthcare we speak of being patient-centered, or encouraging patient engagement, but when we get together to talk about health and ideate about the future, patients are tellingly absent.  That we are missing this important perspective is not surprising given the provider centric nature of modern healthcare, but the time has come to change.
 
Advances in digital health, wellness and personalized medicine are putting information into the hands of individual patients in a way that we have not experienced previously.  Many patients already know more about the genes responsible for their metabolism and mental health than doctors do.  Blogs devoted to bio-hacking help individuals make sense of this information and make it actionable.  This information is outside the purview of regulation and traditional healthcare and some of it is provided by self-serving shills who are only interested in selling supplements.  But dismissing this movement of individuals who have empowered themselves to know and understand their own health is to miss a powerful trend in health.

​Instead of paying lip-service to patients, we need to include their voice into our conferences, our health organizations and our health technology companies.  One movement, started by Lucien Engelen of Radboudumc in the Netherlands is “Patient’s Included” who has triggered a movement after posting a blog post where he stated “ I will NO-SHOW on healthcare conferences that do not add patients TO or IN their program or invite them IN the audience also I will no longer speak at NO-SHOW conferences.” 

From this an organization has arisen around the following charter:
Charter clauses:

1. Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
2. Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
3. Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
4. The disability requirements of participants are accommodated.   All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
5. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.

 
I am supportive of this approach and have begun to work with the organizations that I interact with to adopt this charter for programs delivered in Canada.  I encourage each of you to do the same.

Check it out: patientsincluded.org