Patients Included Charter: Making it adoptable rather than daunting
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.
Patients Included Charter clauses
- 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.
- Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
- 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.
- The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
- 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.”
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.
- Kathi Apostolidis – Patients in Power Conference
- Annette McKinnon – Patients Included: A Charter for Conferences
- John Mack – The Patients Included Movement: My Comments on the Global Charter, re “Key Patient Advocates” & Transparency
- Pharmaguy interviews Casey Quinlan about the charter
- Tessa Richards – Is your conference “Patients Included?”
- Andrew Spong – #PatientsIncluded accreditation can ensure patients are at the centre of future healthcare events
- Paul Tunnah – Democracy Comes to Healthcare
- Paul Wicks – Making sure conferences are “Patients Included”
Please let me know if a blog should be added to this list.