Skip to content

Patients Included Charter: Making it adoptable rather than daunting

May 19, 2015

Too many health and medical conferences continue to exclude patients and family caregivers. How can we change that? #patientsincluded logo

On 1 May 2015, a group of volunteers, spearheaded by Andrew Spong (@AndrewSpong), crowdsourced Patients Included: A Charter for Conferences. Based on Lucien Englen’s declaration, it contains 5 clauses that address the inclusion of patients on planning committees, on stages, and in audiences at medical meetings and conferences.

From PatientsIncluded.org:

Patients Included 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.
  4. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
  5. The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
  6. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.

What is the purpose of the Patients Included charter?

“The Patients Included charter provides conference organisers with a means of demonstrating that their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are neither excluded nor exploited.”

How can a conference achieve Patients Included status?

“Patients Included status is self-assessed. A conference successfully meeting all 5 of the charter’s clauses may accredit itself as a Patients Included event.”

Medical conferences that are certain they meet the criteria have the right to use the “Patients Included” logo. It is downloadable as JPG or as PNG or TIFF or PDF and can be used free of copyright.

The charter authors set out to create a charter that is concise and relatively easy to adopt. Using simplicity as our guiding principle, we hope that more and more conferences organizers will include patients and family caregivers. It will hopefully also help support people who wish to provide guidance to conference organizers. We are confident that conference organizers will rapidly come to realize the benefits and will go beyond the minimal requirements outlined in the charter.

As a #PatientsIncluded co-author, I’d like to use this week’s #hcsmca chat to discuss how we can encourage the adoption of the charter. Join me, Andrew and other co-authors on Wednesday, May 20 at 1pm ET  (time zone converter).

  • T1: How might we help conference organizers to view #PatientsIncluded clauses of the Charter as approachable rather than daunting?
  • T2: How can #PatientsIncluded help to add diversity (in terms of geography, diseases represented, demographic considerations) to conferences?
  • T3: Could the #PatientsIncluded approach have an impact on clinical trial design and reimbursement decisions? (See 3rd last paragraph of blog by Paul Tunnah)

I also encourage you to read the various articles written by some of the charter’s co-authors.

Please let me know if a blog should be added to this list.

2 Comments leave one →
  1. May 20, 2015 1:09 pm

    Just tweeted idea re the Ts question and re T1 encourage journals to take step BMJ is taking to only offer media partnerships to conferences which fulfill #PatientsIncluded criterai. @tessajlrichards

    Liked by 1 person

Trackbacks

  1. #hcsmca Time to Take a Bow | Colleen Young

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: