UPDATE: Patients Included, a charter for conferences was published online here on 1 May 2015 at 2pm UK time.
Kristi Durazo, Valentina Jaramillo, Tessa Richards, Sara Riggare, Andrew Spong, Paul Wicks, and Colleen Young participated in the inaugural Patients Included Global Patients’ Charter discussion, which was held as a Google Hangout on 11 March 2015 at 6pm UK time.
Core information about the charter can be read here.
Clauses submitted to the charter to date can be read here
General group observations made by participants regarding the charter
1. A charter of five clauses was considered to be sufficient to take the charter to publication.
2. It will be mandatory for all five clause requirements to be met in order for a conference to be deemed compliant.
3. A tiered (i.e. gold, silver, and bronze) system of classification awarded to conferences was considered too complicated to go to launch with. The group felt it to be important that the charter be achievable so as not to dissuade potential adopters from undertaking the adaptations necessary to be in compliance. The group also felt that in possible future iterations of the charter, conferences incorporating additional benefits for patients could be recognised in a supplemental manner by means of a commendation, or something similar. For now, the group felt that it simply wanted as many conference organisers as possible to acknowledge and comply with the Patients Included Global Patients’ Charter.
4. Compliant conferences should be able to self-validate in order to become Patients Included accredited, and thereby be entitled to display the Patients Included REshape & Innovations Center trademarked logo, and link to the charter. It was agreed that it would be self-evident should conferences claim accreditation yet fail to meet all five of the necessary criteria due to their public nature. It was also considered unlikely that non-compliant conferences would use the Patients Included logo on the basis that the ensuing critcism they may attract as a consequence could compromise the event’s viability due to Patients Included advocates’ lobbying, petitioning speakers to withdraw, and so on.
5. It was proposed that all signatories of the charter (which will be signable online post-publication, as well as pre-publication) be able to show their support for the initiative by posting a graphic with a message to that effect which will be downloadable from patientsincluded.org subsequent to the publication of the charter, provisionally scheduled for 1 May 2015.
6. In order to move the charter forward, it was proposed that the clauses cited below be circulated as version 0.5 for discussion and feedback among contributors and other interested parties. Ratified by the end of March 2015, a Creative Commons-licensed version 1.0 of the document will become the Patients Included Global Patients’ Charter on 1 May 2015 until such time as it is reviewed, and possibly revised. A two year review and revision cycle was proposed, beginning in 2017.
Clauses that are currently being considered for inclusion in the Patients Included Global Patients’ Charter
The participants proposed that the five clauses cited below be considered essential in order to meet the charter’s objectives, namely to ensure that patients are neither excluded, nor exploited by conferences.
These clauses are presented as a version 0.5 of the charter for discussion as described above.
Clause 1: The conference (defined as an event held by a commercial entity, provider, society, association, or organisation) offers patient scholarships covering travel and accommodation in full, in advance.
Commentary: the number of scholarships and the geographical location of applicants is not stated in order to simplify the compliance criterion, but the use of the plural form indicates that at least two scholarships are required to be offered per event.
Clause 2: The conference covers the travel and accommodation expenses in advance of all invited patient faculty, be they participating in the advertised programme as speakers, moderators, or in any other capacity.
Commentary: the language makes an additional stipend to compensate the patient participants for their time optional rather than mandatory.
Clause 3: The conference ensures that patient faculty are involved in every element of the scheduled proceedings, satellite meetings, or allied events which feature any aspect of patient experience or interaction as their subject.
Commentary: a broad definition which those wishing to exceed the charter’s requirements would make certain covered pre-event planning too, for example.
Clause 4: The conference is streamed live online with no registration required, at no cost to participants, with questions and comments from patients being both solicited and incorporated into the proceedings in order to facilitate full participation from those not attending in person.
Clause 5: The conference will alight upon, pre-advertise, and actively promote an appropriate official conference hashtag that is not in use for other purposes.
All comments welcome.