The Patients Included Charter A Roadmap for Patient-Centric Conferences
Pharmaguy interviews Casey Quinlan, Co-Founder at Patients for Clinical Research, journalist, author, ePatient and patient advocate (see Bio), about Patients Included: A Charter for Conferences and how the pharmaceutical industry can help ensure more patients are able to attend and participate in patient-relevant healthcare conferences.
Air Date: Thursday, 7 May 2015
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Background
“Patient centricity” is all the rage these days among pharmaceutical industry conference attendees and speakers. It is even becoming more common for actual patients to be part of the faculty/speakers and/or attendees of these conferences.
This wasn’t always the case, which is why Lucien Engelen launched the “NO-SHOW Patients Act” in 2012 (read “No-Show patients on conferences : Patients Included“). Lucien founded and is the Director of the Reshape Center at the Radboud University Medical Center located in the Netherlands. The Center is at the “convergence of patient empowerment and (exponential) technology.”
Lucien said he no longer could imagine a conference about healthcare with a NO-SHOW approach of patients, by which he meant:
- no patient IN the program,
- no patient ON the stage or
- no patient IN the audience.
Lucien announced he would boycott such conferences by declaring “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.”
The “Patients Included” logo shown above can be used free of copyright for conferences that have patients ON stage, IN the program or invited as patients to the conference. “Do not ask US if your are eligible for it,” says Lucien, “the audience will be your ‘judge’ ;-)” BTW, you can’t use the fact that “we are all patients” to qualify.
Now the “Patients Included” movement is getting more complicated. Some activists are developing a “Global Charter” that goes much further than Lucien’s NO-SHOW Patients Act and lays down specific compliance guidelines.
Questions/Topics of Discussion
The discussion focused on the following Charter clauses copied from the patientsincluded.org site:
- 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.
Guest Bio
Casey Quinlan (the “Mighty Mouth”), in an attempt to recover from two decades working in network news, decided to put her storytelling skills to work on behalf of business clients rather than assignment editors. Casey has navigated the healthcare system as an advocate for her parents and then on her own behalf when she got cancer for Christmas in 2007. She wrote “Cancer for Christmas: Making the Most of a Daunting Gift” as a call to action for patients to become full participants in their health and is one of the Disruptive Women in Health Care. LinkedIn Profile.
