Friday, 1 May 2015

Patients Included: A Charter for Conferences

The Patients Included Charter for Conferences has just been published today, May 1. This post describes some of my feelings about attending conferences as  a patient.

Before attending Medicine X at Stanford University in 2014 I had only been to one medical conference other than those put on by the Sjogrens Society of Canada of which I am a member. 

Once I returned home from MedX it seemed like a natural progression to be involved in and learning in a more public way. After years of support groups, blogs, Twitter and searching for knowledge every day, the MedX experience was a catalyst. Seeing so much enthusiasm for the patient voice and for change in healthcare made me feel that my thoughts and opinions were not fringe ideas any more; they resonated.

After MedX, last September there was a Patient Experience conference that I remembered from the year before - they were widely criticized through social media because there were no patients, either in the audience or as presenters, despite the name "Patient Experience." In 2014 they added a strong patient advocate to the program planning and invited patients to attend and to speak. No one in attendance complained about patients being there, and this year they seem to be following the #patientsincluded model.

The benefits of conferences as stated by a Healthcare Conference company : a chance to "engage in open honest discussion, networking with peers from across the country and leveraging knowledge from leading experts in this field"

The benefits and knowledge available at a conference can be put to good use by any of the team members involved in health care, including patients. In fact when the information learned is useful and novel, it gets shared at the speed of social media through tweets, blogs, chats and even in conversation.  As an example, less than  a week after the CADTH Workshop about Critical Appraisal in Saskatoon I passed the appraisal tools on to my partners in a PaCER research project and used it to inform my opinions in a Health Care Social Media Canada (#hcsmca) tweet chat. That's a speedy way to get it out of the silo.

I think there is no better way of mobilizing knowledge than to disseminate it widely. As Jack Andraka said at MedX we need knowledge democracy and to me that means more than just the facts - patients need lived experience with the healthcare spectrum in an atmosphere where they are people first and patients second.

More than meets the eye to patients

Last night I had dinner with a group of active patients and for interest I asked them for their job titles. This is what I got:

I am a patient  and have a PhD in Cellular Molecular Pathology.
I am a patient and a Speech Language Pathologist.
I am a patient and an IT Professional on the IBM Watson Health Team.
I am a patient with 20 years of experience in qualitative research.
I am a patient and a senior project manager in IT.

There is always more than meets the eye.

The impetus to have patients included in conferences has been part of the engaged patient movement for years, with Tom Ferguson laying the groundwork, with Lucien Engelen creating a logo to be used where patients are included, and now with Andrew Spong and an international group working together to create "A Charter For Conferences." It has been introduced on Friday May 1 and this blog fully supports the Charter.

To find links to more blog posts about the Charter watch #patientsincluded on Twitter.